SWEET 16

A fair amount of info, I'll try to be thorough (and brief).  Yesterday, you know, I did a buch of Lasix trying to pull off some extra fluid.  One unintended consequence of micturating every half hour for 10 hours is you make Swiss cheese of your electrolyte profile.  Cheesy electrolytes don't fly around here.  No sir, not a bit.  What you get is repletion, pronto.  So, sometime last night after a very good day, was watching a body surfing vid ("Come Hell or High Water [4stars]) with baby bro.  Repletion caused a harsh to severe reaction in your blooger.  Best way i can describe it:  being rolled up in an area rug and then dragged behind a truck.  Several micrograms of Fentanyl and brotherly hand squeezing later,  I emerged well enough to sleep.

Today I started out cannon-shot, feeling even better than yesterday (W: 2.91 almost a 3x kick, RBC: 25.5 small but certain increase, PLT: 15 small dip— plt production will be best and most certain sign that engraftment is complete) but as soon as the repletion transfusion began, out came the rug rollers.  They stopped the infusion immediately, hit me with some Fentanyl and sent me on a hospital tour for Echo-gram and chest CT.  Good news is echo was deemed beautiful.  Bad news: something funky with CT scan.  Definitely fluid, which is also heard through the steth but also some "opacities" which they cannot explain.  And these folks are not happy when they cant explain.  Most likely hypotheses: a)bacterial infection b)fungal infection c)consequence of extra fluid.  Good news of the bad news is I am symptom free, no temps at all,  feel pretty good, best in days.  Head Cheese says,"I'm not worried, but I'm always worried.  I get paid to worry"  My take having  known the guy a while now and being practiced a reading his words like tealeaves:  It's probably nothing or at the least a consequence of the low period.  OR it might be something, if it's something they'll figure it out an fix it.  Fair warning: long long shot it could be PCP pneumonia, high morbidity, hard to treat.  But unlikely as they have been treating it prophylactically for weeks now.

The  Upshot: more tests tomorrow.  Electrolytes orally in what is basically a nuclear gatorade (sans sugar)

There was talk of Sun or Mon discharge, still an outside shot, but that will likely be delayed.

BE KIND, NO BLAME, LOVE EVERYTHING.

FIFTEEN

big jump—Whites: 2.91    RBC: 25.5   Plt: 15

RBC and Plt of course can be misleading as they can be supplemented by infusion.  The real ballgame is whites, which cannot be  enhanced.  I mean, they can and are with a drug called Nupagen, but that's all part of the science/chemistry.  Point being, I am hanging on to them and they are populating a healthy rate.  85 more days and I might be able to eat in a restaurant.  Up and about the room today.  Hard to stay still on 40mg of Lasix.  My 6 furlong time is improving.  Bro Nate helping the hours shorten.  Really, a day about which I cannot complain.  A gift it is seeing the  horizon farther off.

FOURTEEN

First official not-simply-miserable-miserable day.  Still some hallucinations.  This morning for example I thought i was in a restaurant done up to look like a saloon.  I say again I havent left these four walls in a number of weeks. My mind must want out badly.  Still fair amount of mouth and throat pain.  Edema, Shreck feet.  Three or four kinds of rashes.  And I have the world's fatigue market cornered.  Still, not miserable.

Counts are up— White .9   RBC: 23.6 (plus a bag)  Plt: 21

a team of docs comes int to see me every morning.  They always say, "you look great!"  I always laugh and it gets more or less awkward from there.  Keep up the good work, kids.

Thirteen

Some memorial memories from the the last two days  Though my memory ain't (when are we gona make a spell checker that recognizes the word ain't?  You know, because it is.  A very important word.) so user beware. I'll do my best.

Spy Cookies.  Black, terrible tasking. People ask you if you have your spy cookies, show it them, put it back in your pocket.  No idea.

Guy with mustache and fedora, dark glasses and houndstooth.  I'd see him my eye opens, close them to make him go away.  He'd appear off my left shoulder and laugh to himself

smoke

ants

spider webs

the door to my bathroom was at various times the door to: a gym, a pool, a basement, an out door porch.  My surprise was great when i went to take to take the air.  Was alarmed even to learn this morning that I'd never really left my room at all.  I was sure I'd moved at least once.

400 white cells.  They say i'm making the climb out.  Right now i'l just have to take it as an article of faith

All turnedout in my turn out gear and I have driven it straight to the mayor's house (in the Fire Truck) where I had hoped to give him his next baby but wait, maybe we should fight the fire first.

Ice pinch-hitting, taking dictation and doing my best to translate muddled declarations into coherent blog notes...

According to CJ:

Days 10 and 11 quite a disappointment to me as they are to you, I'm sure.  Bullet form will have to suffice:

• No bullets.
• Three cheers for Erin, the nurse extraordinaire.
• This will surprise many of you:  I've had a number of delusions.  Phantom visits, dogs scurrying by, numbers in vivid color, and my wife's favorite:  spy cookies.
• Last day of methatrexate (chemo), hopefully forever.  
• First dose of Neupogen to stimulate white cell growth.
• Small bump in white cell production all on my own.

Ice again.  Mid mutter, CJ started swatting at something and mentioned pills landing on his heart.  I'm thinking that means it's time to close.  In coherent moments, Chris asks that I read him your comments and they make him smile.  Keep 'em coming. Thanks.

ten

Worst day ever.  And my wife showed up.  That bad.  Keep the comments coming.  Tomorrow's 11.  

turnmeon deadmen turnmeon deadmen trurnmeon

Starting to rough in number 9 post, I thought I skipped a day. Then I thought I got it right, then I had to check the official box score, then I remembered a snowman is an 8, no NINE snowman is nine.  What the hell.  EIGHT.  Snowman is 8.  Almost had to call McCready at dinner to tripple check.  Something I feel totally entitled to do now that we've talked 3 times in the last 10 years.  A testament to either my sense of entitlement or the depth of our brohood.  ALAS,  It is, as they say in rehab, DAY NINE.  Don't know how in Dilaudid I messed that up 4 times before accidentally getting it right or having it right all along.  Whatever, nevermind.

Did you find a Heme-Onc text book?  How are you going to understand what is going on?  We cant ALL be calling The RICK.  Hemoglobin is the oxygen-carrying substance on a red-blood cell, what makes it red.  It is measured in weight per volume.  What's your Hemoglobin?  You Healthy stooges have 13-18 grams of hemoglobin per decaliter of blood.  At the moment I got like 7.6

Hematocrit is percentage of  total volume.  It is a cruder measurement, easier to make and eyeballs close enough for government work.  People who find themselves in or around the mean have Hematocrits of 39-54, I.E.: 39-54% of the individual's total blood volume is hemoglobin.  When i entered the twilight zone i was 39.7.  Today, I was 23.  My Mendoza line is 24.  Ergo, I got a bag of RBC's.  Tomorrow I'll let you know what kind of bump I got and, if I feel like it, deliver the platelet lecture.  If if I don't, dialectical materialism.

Elvis and Dick Nixon have their picture made.  Note the man's suit  Enormous collar, thick contrasting stitching on same, flared tail AND sleeeves if memory serves?  Sylish and ugly, bold and enslaved.  THIS is the particular band of cheep suit I feel like today.  Turns out you need be neither cheep or a suit to be a cheap suit.

Snowman

This is my son imitating me

My knee imitating HEATHER.

Today, I was informed, is Mass culture Tuesday.  My mind races:  Noon hours lecture by Lady GaGa?  A book signing by R0BERT CARO.  PERHAPS THE PREFORMING ARTS (TALK ABOUT A TOUG   ONE TO SPELL—NOT FROM THE DRUGS, but from UNDERUSE.) P_R_E_F_O_R_M_I_N_G A_R_T_S. WHEW. THE ARTS DON'T GET ENOUGH PLAY

No such luck: was was presented with extra-long swabs and likewise longswab-catches for said swabs.  Go tickle your nose, ear, throat, and—you guessed it—old stank eye.

MORE TO SAY, AS ALWAYS, BUT GOSH AM I TIRED.  Today, Someone you know was reported by a phlebotomist to have quote--monster veins--end quote.  Lost one of my Hickman central lines today. Turned out, aint no big thing, though the run up certainly was.  I'll look into a not creepy picture.  Creepy coefficient quite high because of degree of Man-scaping.

I like cats in principal, people who write poems and anyone on this silly (getting delightfully sillier) blog

HEMATOLOGICAL TRIVIA:  A HEMATOCRIT OF 35=HEMOGLOBIN OF___???  AMSWER IN TOMORROW'S BLOG WHICH WILL have the virtue of being todays blog as well.

seven

More of the same, some more of that and then some redundancy scattered about.  To mix things up I watched the woman from housekeeping mop the floor. I said good-bye, nodded acknowledgement that the floor was now slippery, put my slippers on and very aggressively did an impression of an ungulate on a frozen pond.  Finale: bashing my knee open, filling PJ pant leg with platelet-skim blood.  Had to explain myself to no fewer than 6 separate stethoscopes. Good news is no more fever.  Save the one Dr Girvin gives me sans stethoscope (unless playing doctor.)

Moral of the story: dont own slippers, do own stethoscopes.

We got each other and that's a lot for love—we'll give it a shot.  Post other excellent JBJ lines to comments.

VI

Something of a nadir today.  Counts zero.  Spiked a fever.  Excetra Excetra. Was pulled from the mire by visit from The Rick. Two hours went by in a blink, and he let me beat him at chess.  Pretty badly, too.  Rejoice in adversity.

This bishop has no priors or outstanding warrants.  Little slant though.  To be forewarned is to be forearmed.  With big forearms.
Ya'll are my kinda people.

5ive

Regrettable consequence of radiation and horse doses of Cytoxan: Mucositis:  Inflamation and (counterintuitively) thinning of mucus membrane.  Usually in the mouth and throat.  Imagine gargling with napalm and then smoking the cherry end of a Pal Mal. (In Hoc Signo Vinces).  It is stout, persistant ouchy.  Mine burned right through 10mg of oxycodone (liquid).  So I was upgraded. . . to hydromorphone (Dilaudid-TM). It's a carbon chain or two from sister morphine, about 10 times stronger and (they say) not as addictive.  Not sure how the less-addictive part can be true.   If this stuff was around in 1865 we might still be fighting (and winning--nice profile pic CIP) the Civil War. How do you spell relief?  D-i-l. . . you won't get much farther than that before you start running through poppy fields.  Strawberry fields.  WC Fields.  Water Closet. Water is like so watery. Wet.  Weeeeee.  Lets get a balloon!  Man alive is there better living through chemistry.  DO NOT play with this one.  Wait until you are in wincing pain, elsewise I think you turn into Whitney Houston.  If you have some, throw it away or put in safe deposit box until your next hacksaw amputation.

The other thing they gave me is, no lie, Magic Mouthwash.  Part antacid, part benedryl, part lidocaine (rhymes with?)

The white knight is talking backward, the red queen's off with her head.  Remember what the door mouse said.

NOW i understand the horse/rabbit picture.  It's secret is safe with me.

Feed your head.

QUATRO

Lost my hair today. Actually i know right where it is, but it's no longer attached to my scalp.  Fourth or fifth time by now I guess.  Getting pretty good at it.  Nate sneaked a razor in for me.  Risky business shaving with 16k platelettes.  Not really, (if you can't shave w/o cutting yourself by now, just go home) but its not the sort of thing health care pros encourage.  Felt a little bit like sneaking applejack from Phil Naughton's Liquor cabinet.  Gosh but that was one watery fifth of brandy when we were done with it.

God made a few good heads, the rest he covered with hair.  I sorta look like Sinead O'Conner.  So I tore up a picture of the pope.  Still have a couple pull ups.  Im hanging from a body crane  good to 250 Kilos.  Only problem is it slides left/right  up/back.  It'd kill your Fran time, but it's good training.  This too, of course one must do surreptitiously.  The coast is clear.  Break some rules.  Whoso be a man must be a nonconformist.

Get comfortable being uncomfortable.

THREE (The Song of Wandering Aengus)

Got lots of reasons to get home.  This is one.  Uh, two.  Three actually.

Visits from Richard McCready, Sarah Heneghan and Nate these days.  Lots of people vying for the title.
Leaderboard goes:  HLG, Nate, M&D, Lut, McCready, Heneghan.  You gotta want it.

TWO

Not to put too fine a point on it, above is graphic representation of what the poison does.  Top number, the one falling like a drunk on roller skates is my white count.  Yesterday I dipped below 0.  Infection fighting ability officially in the tank, but more importantly so is ability to resist foreign (Kraut) cells.

Second number, holding more or less steady, is RBC.  It's kinda a pleasant puzzle to them.  Im taking it as evidence that strong people are harder to kill.

Number below that (not pictured) is platelettes. Things that make your blood clot.  I came in north of 70k.  Today im at 14.  For all you keeping box score at home.

I am making good friends with Lorazepam (Ativan tm).  They say it's for anxiety, which I greatly bristled at to begin.  Now, call me anxious, call me a worry wort, call me a fine china tea cup.  Just gimme the shot.  Ahh, that's better.  Try some it's fun.  What I'd really like to see is a certain southerner on Ativan.  Hell, my guess is he'd curl up and go sleepy-bye with a statue of Sherman.  (William Tecumseh, don't you know).

Go ahead and gross me out now, betcha' can't do it.

The South is not going to do it again.  They never really stopped.

ONE

They actually asked me if I wanted the bag as a souvenir.  Ew.  Thanks but I'm good.  Just the contents please.  Doc tells me I have about three days until I REALLY start feeling bad, which is a tad on the hard-to-imagine side, but I'm somehow grateful to be on the lookout.  I gather that, cellularly, things are a bit beyond where they are, er, symptomatically.  Symptom train still due on the track.  ONE ABOARD, says the conductor.  At least it wont be hard to find a seat.

So you guys dont want to borrow my bunny and pony masks?  Fun at (kids) parties.

Keep it player, y'all

The Ides of May

By what seems to be longstanding stem-cell transplantation tradition, the day you get them is your new birthday.  Day zero.  This sorta thinking didn't really pan out for Pol Pot, nor do we wish that it should have, so I'm not too sanguine about the practice.  Moreover, I rather like the birthday I already have (Sept. 15 mark your calendars, please), my APGAR score would probably pretty low today, and, of course, there are the questions about driving age, registering for the draft, and what constitutes a legal beverage.  It could create all KINDS of legal trouble for that cougar Heather.  Most of all being reborn will totally scramble my plans to run for US Senate.  But anyway, today is the day.  Sometime after 4 PM, they tell me.  The procedure is really just a blood infusion.  The cells drip from a bag into an IV line.  WIth luck they engraft, propagate, and give me a new immune system.  Something worth a cake with more than one candle.

Stay tuned if you are inclined; I'll let you know when the cells are safe in their new home.

Some transplant trivia:  I'll have a new blood type.  In a year I'll need to be immunized.  Next week I'll be fluent in German.  The red cross wont have me.  My old blood is under study in at least three major US laboratories.  My GRE scores are no longer valid.  I can continue my work for the CIA.

Talk to you soon.  Thanks for hanging around.

UPDATE: 8:30

2nd UPDATE:  So that's that.  Bag of what looked like V8.  Blew on it like you would dice at the craps table.  Nurse Katie hung 'em up and let 'em drip.  6.23 million cells.  One or two might have got hung up in the line.  No adverse reaction.  No temp spikes.  Certain sense of relief.  Day zero in the books.  Going back to wise 39.  Sleep tight my peeps.  Gonna try to do the same.  See in the funny papers.

MINUS ONE

The Dalai Lama walks into a pizza shop.  Counter help asks his order.
"Make me one with everything."

Rim shot.

Trial's done.  Cytoxan done.  Neidermeyer's family, dead.  Started anti-rejection drug Tacrolimus.  Tired as a one-legged man in an ass kickin' contest, a one armed paper hanger, with the crabs, bone tired, TIRED.  But buoyant and hopeful and happy for my parents' company.  Tomorrow is day 0.  Fingers crossed.  Let you know how it goes.

Form is emptiness.  Emptiness form.

penultimate (T-2)

more dope on ATGAM, the anti-rejection trial juice:  Anti-thymocyte globulin.  Three varieties from different cell sources:  equine, rabbit (cuniculine??) and synthetic.  I have (if i have) the synthetic.  The animal versions are in somewhat wide use in organ transplants in the US but they are highly variable by batch as they come from different horsies and bunnies.  The synthetic version is more standardized, reliable etc.  And no one likes killing horses, except the NTRA and Hollywood.  Rabbits are good and proper in paella.  I don't know and probably won't know if I got the ATGM or sugar water (blind study).  But my hunch is I did because of some side effects, hot flashes and whatnot.  Then again those could be pyschosomatic.  Who knows.   Itching seems to have resolved itself over (sleepless) night.   Yesterday was antepenultimate and before that preantepenultimate, if you're into that kinda thing and if you are you already knew it.  Trying to fight off the shack whacky.

Stop thinking and solve all your problems.

In other news:  Generalissimo Francisco Franco is still dead

pax

T-3 (2...1...go)

. . .And now for something we hope you really like.  Anvil meets hammer.  Cytoxan started around 5 am.  Around 10, began T-cell killing drug trial.  Supposed to help with graft/host disease.  It's not really a trial in the experimental sense because this drug happens to be the way most other countries do it with much success.  It does not, however, have FDA approval.  My Dr. (one Im not married to) is the national PI for bringing that about.  Even though his interest is technically conflicted his council was to try it and my decision was clear-eyed, much as they ever can be.  There's a good bit of upside and the only downside is sometimes you don't get the upside.  A bet with house money.  Anywho, throw in some horse doses of  Benedryl , anti-biotics, steroids and that'll give you some picture.  Regular drugstore cowboy, I.  I'm not gonna talk about the itching.  Not gonna talk about it.  The itching.  Not.  Okay: if Lut wasn't here, today  mighta been a tall (itchy) hill to climb.  As it was, he being present, flew by way too fast.  Maybe we ought have a contest who can log the most days in Boston by the 4th of July.  A contest for second place, obviously.  Lut is up one on the field.  (Actually he's not.  That's an intentional slight to see if I can goad someone into posting to comments.  Now that's the famous Potter pressure.  Shoulda gotten into car or drug sales. Don't think I coulda handled all the respectability, though)

Now watch me pull a rabbit outta my ass.  Hat.  I mean hat.

Hat.
xoxo

T-4 (metallurgy)

Radiation complete.  Rad techs came to love my iTunes selections, and we jawed about music a good bit. Parting such sweet sorrow. Got a weird kinda suntan, radiation tan and itchy skin.  No third eyeball except on the back of my head where it may be useful.  Itchy and scratchy.  maybe it will put the lotion in the basket.  Speaking of weird:  got a reiki treatment.  Totally flaky and hocus-pocus.  How much for a faith healing? But what do you want, practitioner was a lax player from Maryland.  After the snows and views of Colorado bored her she decided to take up the healing arts, god bless her. And we all know where she stands on medical marijuana.  Actually she STANDS on it, tucked away in the false heel of her shabby-chic zapatos vaqueros (Scott Francis Naughton: that means cowboy boots er, shoes).  This might be the very not-anxious me talking.  Anyway, thanks to reiki, my energy is now energized engaged engozzled  and not at all enervated.  except when im tired.  or sleepy.  Follow up appt tomorrow.  I think reiki babe sells Amway too, or Shaklee, or timeshare river lots next to the Hiawatha.  Get your orders in.

so a handy way of thinking of the radiation is a an anvil.  you could drop it out a window on some sucker's head.  or you could use a hammer and pound something hard very very thin against it.  Radiation=anvil  Chemo=hammer.  Anvil+hammer=thin


Translation for my (Northern) Lycoming County peeps struggling to keep up (SFN: this means you):  deer, mud, fart joke, poop joke, poop and fart joke. Crack about Nate's girl in Philly.  Deer, beer, mud, beer mud, where's Dell? Where are the meatballs?   four wheelers, Winkin' boots, bonfires, Harvey's socks, Applejack.  Something totally uncouth and revolting even to my ears, said by Damon.

That's not word for word but pretty close.  Left my Trout Run-to-English Dictionary in the truk (4x4).

T-5

Madam Curie deigned not to patent her process for isolating radium.  She hoped scientific work on the element would go on unhindered.  It's said that when she passed to the next electron level of life her skin glowed.  And even now you can't read her cookbooks, too toxic.  They are under lead in Poland or somewhere, I think.  Today is as good as any to be thankful for her work and science altogether.  Anyone else tired?  Whew, I'm tired.  But not glowing yet (if you don't count my natural radiance).

come on slackers, post to comments.

T-6

So, the total-body irradiation (TBI in transplant speak) is really just a picnic.  Today's picnic offered an appetizer of a dozen uncooked steamer-clam feet, served in drawn olio and cigar ashes.  The second course was a raw cockroach salad dressed in past-expiration-date buttermilk and 44d cough syrup.  Main event was a gumbo of maggots and fly parts and chicken blood in mouse stock stirred with a toilet plunger for that extra je ne sais quoi.  If you haven't yacked yet, you got stonier guts than your blogship.


The cure for pukers is an anti anxiety drug.  Not saying im not anxious, but what really revs me up is taking brain dope.  So we have what Heller called a Catch-22.  Nurse had to emergency access the med closet and bring out the chained ball of Kryptonite to calm my powers.  Anti-anxiety measures work chiefly by putting the user to sleep.  Burbon much cheaper and tastier.  Any volunteers for the first run?  You fly, I'll buy.

T-7

Not the sorta day you'd want to do without your wife.  After my 8am brain bake my skin turned green and my physique tumescent. And I went deaf.  Waited around  for my 13:00 check in.  Did check in and then waited for six hours, only two of which were in a hospital johnny.  Not the lavatory, the silly things that let your backside get lots of wind and generally have the dignity of a bird shitting on you.  But hey, they only shaved my chest once.  Man-scaping I think it's called.  Got two Hickman catheters, that's four direct lines to the superior vena cava if you're keeping score at home.  Got to my room (7B-32 Brigham and Woman's Hospital) and they checked me for contraban, wiped down all the legal stuff with super special disinfecting wipes, and sent the guns and ammo back.  Had a last meal of seven loaves and two fishes, no wait, wrong meal.  Roast beef sandwich with lettuce.  Last time I get lettuce for many months.  Room has TV, DVD, Fridge, and more latex-free gloves than you could use in lifetime of rectal exams.  Thankfully, they have other designs for them.  In the days to come:  more Incredible Hulk time.  Then the chemo hammer.  Wish I had a picture of Heather jamming into a revolving door compartment with me at the last second, other than that she was very helpful.

The big rock candy mountain

Touched down in Boston 11:15.  Blood work.  Brain radiation.  Tech asked me if I knew what they were going to do.  I heard the question more specifically than generally.  So, no, was hoping YOU knew what you were going to do.  She meant it more generally, like, why are you here, (but not so generally as to be metaphysical, thanks)  Sound the alarms, code yellow, patient is confused, disoriented, in need of counseling.  Or just grouchy and maybe persnickety about the way sentences parse.  Was also given directions down the "blue bird  hall way."  I ask you: is that blue hallway with birds, or a hallway of bluebirds?  Keep your mouth shut.  Do what you're told.

There's a lake of stew and whiskey, too.  You can paddle all around in a big canoe.

Here is the Potter transplant blog.  If you're reading this you were invited.  Don't give out the address, don't tell your neighbor about it.  Don't post it to YouTube.  Trying to save a little dignity, which is hard in Hospital garb.  Plan now is:  Monday, Heather and I fly up for last little bit of work-up.  I admit Tues 5/8 for central lines and commencement of poisoning.  All signs are propitious, good counts, no fungus.  10 pull ups and 305 deadlift.  Check back for updates, news, love songs, nothing but love songs.