Billy Bob's Wild Ride

The Wild Ride Has Come to an End

noreply@blogger.com (Unknown) — Mon, 28 May 2018 16:38:00 +0000

This is Princepessa. This is the one and only time you will hear directly from me.

I am writing to let everyone that has followed this crazy ride that the ride has come to an end...

Bobby Aragon the human referred to as "Not Billy Bob" lost his fight at Denver Hospice on April 17, 2018. The humor he expressed in his blog posts was just how he lived his life.

Bobby gave his liver the name "Billy Bob" when he was diagnosed with end stage liver disease in 2006. By referring to his diseased liver as Billy Bob he was able to separate his disease from the rest of is life.

He began writing Billy Bob's Wild Ride to help other liver patients and their loved ones see that they were not alone and that there was help and services available.

Bobby and I were married for 27 years. He leaves behind a Mother, an older Sister, a younger Brother, a Daughter, a Son-in-Law, 4 grandchildren, more Nieces, Nephews, Aunts, Uncles and Cousins than a person can count.

Bobby's youngest granddaughter is only 9 months old. I want to gather stories about him and his life to share with her when she is old enough. I would greatly appreciate it if as many people as possible would share their memories about him either here or on his Facebook page.

Sáádn´leel` dá' `ya` 'déé nzhó--Long life old age everything good. Jicarilla Apache prayer

So...Did I ever go home?

noreply@blogger.com (Unknown) — Mon, 02 Apr 2018 22:27:00 +0000

There has been some confusion lately as to the living conditions for Not Billy Bob and myself. We are are currently at home with Princepessa, Matilda, Bean and Rasputin.

We are under Hospice Care. This means the doctors believe that me and my buddies the kidneys have less than 6 months of function. A wonderful RN named Mike comes about 3 times a week. He checks our vitals. Then we chat. He orders our meds and various items Princepessa needs to care for us. We have a Social Worker named Trevor, a Chaplin named Tim (we have not met him in person yet) and a CNA Rita to help us with our personal care (we got to meet her just today). The hospice company brought us all kinds of new toys....a regular wheelchair so we can get out and about, and can you believe it and actual chair for the shower. There is an RN on call so if we have trouble in the middle of the night there is someone we can consult. The job and goal of all these people is to help Not Billy Bob live with as much comfort and independence as possible.

Most days Not Billy Bob is in charge the conversation makes sense, he and Princepessa get along and they think life is pretty OK. Once in a while I stick my obnoxious head up and start arguments with Princepessa.

Down the road there are Hospice Facilities. These are places are wonderful and for end of life care.

Not Billy Bob looks forward to every day. Knowing that these days are numbered he tries to make everyone count.

I've followed you on many adventures Princepesa...but to the great unknown mytsyery I great uknown mystery, I go first!

noreply@blogger.com (Unknown) — Fri, 09 Mar 2018 02:23:00 +0000

Soooooooo Not Billy Bob is sleeping at the Anschutz B and B AGAIN.

To catch everyone up. Tuesday 7:30 am (ugh) Not Billy Bob had an appointment on the books for an Albumin infusion. By the time we got there it became apparent that we needed to have the extra fluid removed from us. The kind ladies at the hepatology clinic got me hooked up, took blood, took some fluid out, put some Albumin in and got us both feeling much better. The ladies are Lindsey Pratt (Dr Burton's PA) and Luda (registered nurse). No one, human or liver could ask for better care.

In the mean time.......
the blood went off to the lab. My neighbors the Kidneys are not happy. Floating in all that extra yucky fluid has finally gotten to them. Lindsey is concerned. Not Billy Bob's legs have too much fluid. The only way to remove that fluid is diuretics. The Kidneys cannot tolerate more diuretics. Lindsey, Not Billy Bob and Princepessa have a discussion and they decide we are going to the in-patient pavilion that night. We head home to pack an overnight bag and feed the fur children.

Tuesday evening Not Billy Bob is admitted, lots of blood draws, urine sample, ultrasound just for a start. The ultrasound takes a long time and is painful. This is never good news. Kidneys are even less happy than earlier in the day. No diuretics for now. The docs are calling it a kidney injury. They don't know the cause and working out a treatment plan is a puzzle.

We should back up for a moment:
2 weeks ago Denver had a snow storm on a Monday. Not Billy Bob had been to a doctor appointment at CU Med Center. Leaving after dark Not Billy Bob slipped and took the worst fall of his life in the parking lot. Me, the Kidneys and our neighbors all took a shift. He had some bad bruises on his hip and thigh, but nothing to suggest that us organs were in trouble.

We didn't sleep Sunday night or Monday night. Awake urinating, having taken diuretics. Tuesday night rolls in. Everyone knows the hospital is not the place to get any rest, let alone sleep.

Wednesday means lots more tests. Meetings with all sorts of medical professionals. Finally all the nights without sleep have caught up and Not Billy Bob falls asleep in front of his dinner. Princepessa was here for a few hours, checked in on us but we slept through most of it.

Thursday
Meeting with the Palliative Care team. Group of very kind, patient and knowledgeable people. Not Billy Bob finally admits he needs help. Team is going to work on support services for home. More tests....Meeting with the dental team.

Kidneys are happier or a least not as unhappy. Doctors has restarted the diuretics.

Dr. Burton stopped by. After what seemed like a long chat he admitted he was there for a "social call". It is common for him to laugh at Not Billy Bob's use of technology. Lots of back and forth between Dr. B, Not Billy Bob and Princepessa. It came down to this statement: this may be the liver (that is me in case you have forgotten) "new baseline". My baseline has been good for many years so this last 8 months has been one long slide downhill.The new normal aint so bad when you have such good folks caring for you.

Dr. Bowman is my main doctor during this visit to Anschutz. She is very like Princepessa She is a momma bear. Her plan for tomorrow is to get to work on the teeth. This may mean oral surgery with general anesthesia sometime tomorrow. No food after midnight.....bummer.

Friday:
No home for me or Not Billy Bob today. The fur kids will not be happy. Per Princepessa they are already out of sorts.
Morning visit with Dr. Bowman. Creatnine is up again. No diuretics today. The Kidneys and I are getting a day of rest. She is pressing the dental team to care for his teeth, and remove some while we are an in-patient. The tummy fluid is accumulating again, so a bedside tab in being considered. She talked about placing a drain in the belly so Not Billy Bob can have comfort, and avoid trips to the heptatology clinic every week.

Pallative Care came by again. Left some papers for the VA and papers to change Not Billy Bob's status to allow natural death aka DNR. Not Billy Bob asked way too many tough questions for me, just a lowly liver, to follow. Basically it comes down to this: our health is considered "fragile", our health (me (the liver) and the kidneys) are not going to recover fully from this crisis. We are close enough to the end to qualify for hospice. When Not Billy Bob asked Dr. Baily from Pallative Care "how long?" response was "weeks or months, NOT months or years. Dr. Baily and Dr. Burton concur: Not Billy Bob and Princepessa should be greatful for the years they have had together, but no they need to start making plans for the end.....

Thank you for taking the time to read this long post.

Tap is not always a fun time

noreply@blogger.com (Unknown) — Fri, 19 Jan 2018 05:47:00 +0000

The Word Tap is not always a fun time.........

Most people in American society think of one thing when they hear the word tap.

Tap has a good connotation. Most American people (not entities like myself, the forever taken for granted liver) have good thoughts when they hear the word tap. High school friends meeting in the mountains on a Friday afternoon as graduation approaches, buddies meeting at the bar after work, family parties on a hot summer afternoon. All these have at least one thing in common and that is beer. Goodness knows Notbillybob enjoyed a fair share of it. That is part of the reason he has me the pickle I find myself in today. But I digress....
Notbillybob and I have a new connotation for the word tap. The new thoughts include a large needle, tubing, a liter plastic tub and yet another speech from the hepatology docs about the evils of sodium. In other words paracentesis. Paracentesis always includes an infusion of albumin (material in egg whites). Liver disease can mean weak cell walls because of low albumin. Weak cell walls allows fluid to seep from the organs into the space in between. If this is a new word see the prior post "Happy New Year from the Liver". The sodium lecture is important because kidneys like salt and salt likes water. Too much salt in Notbillybob's diet means we hang on to too much water. Notbillybob takes "water pills" to be rid of the extra water, but this is hard on the kidneys. His are in good shape so far but we cannot be too careful.

So today was to be a typical post hospital visit with the hepatology nurse practitioner. Instead she was concerned about the weight gain since our release. Upon exam of me and Notbillybob she went for the ultrasound. She then asked if I would like to be "drained". Knowing it would make us both feel better we agreed.

Today she drained 9.8 liters (that is roughly 2.5 gallons, without exaggeration 20 pounds) of fluid. No sign of infection. Today was a basic outpatient procedure. No hospital admit. When we arrived today Notbillybob weighed 216 pounds. After the tap he weighed 196 pounds. The last time he weighed this low number was at the 6 week mark of Navy boot camp.

Needle came out and the three of us headed home. By three of course I mean myself BillyBob, Notbillybob and the lovely Princepessa.

Before we left the building we indulged in a cup of homemade Chicken soup. If you are one of my docs I did count. This came to only 630 mg of sodium.

Happy New Year from the Liver

noreply@blogger.com (Unknown) — Wed, 10 Jan 2018 17:44:00 +0000

Weeeeeeeee!!!!!

Today is day 6, six days in the ANSCHUTZ HOTEL. Notbillybob
arrived Friday morning at the hepatology clinic. The hepatology PA said "can I be totally honest with you... you look like POO. This may sound funny, but in reality I, Billybob was very ill. She said "I am putting you in the hospital." Notbillybob started to cry. Princepessa started to cry. The hepatology PA did not start to cry. She said "don't worry, we are going to take very good care of you." We are going to do a paracentesis. A paracentesis involves inserting a large needle in the space in the belly between the organs to draw out the extra fluid. The PA took care of this in her office.The biggest worry comes if the fluid shows signs of infection.
The procedure did not hurt because notbillybob was so swollen. The PA was shocked at the amount of swelling in notbillybob's belly. PA took 10 liters of fluid. A liter is a little more than a quart so 10 liters is 10.5 quarts or 2.6 GALLONS!! Notbillybob arrived at PA's office at 255 pounds. After paracentesis he weighed 229. He felt sooooo much better. Tests came back the lab fairly quickly. NO INFECTION!!
Next notbillybob was admitted to the hospital. Now the hard part started. Getting off the rest of the fluid! It had collected not only in his belly, but in notbillybob's legs, feet and even his behind.
His weight on Saturday was 219. This is the same weight as when he left for boot camp in 1981!
Unfortunately the sight would not stop seeping. Docs finally had to stitch the sight closed. Notbillybob was VERY brave. No anesthetic. He does not recommend this as it was not fun.
Monday they took an additional 3.5 liters of fluid!! There is a sofa that makes into a bed so Princepessa spent the night to keep us company.
Tuesday fluid loss has plateaued and blood sodium was low. These things caused docs to limit fluid intake and add IV diuretics.Ugh. Lots of peeing. Found urinary tract infection so the docs added antibiotics to the already large number of pills we have to swallow. Another night with Princepessa.
Wednesday 203.5. OMG. Notbillybob has lost 52 pounds in fluid. Princepessa is shocked she has never seen her love this thin. Notbillybob says "No giving up!" He has a good appetite this morning and ordered a hardy breakfast.
PT came by and pressed how important it is to keep moving.
Doctors rounded at 10 AM and said you can go home!
Sodium restriction is in place 2000 mg per day, diuretics will return the dosage in place prior to this event, but fluid restriction has been removed.
Nurse is here with the discharge papers. We are headed home.....

Three months later...

noreply@blogger.com (Unknown) — Thu, 19 Oct 2017 09:56:00 +0000

So, we have one radiation treatment left, tommorrow at 3:20 in the afternoon. Hopefully it will go more smoothly than this past afternoon, Notbillybob fell flat on his face in the parking lot at the Anschutz. He's just dizzy as hell. His stupid sphenoid bone has a huge tumor in it. Making him dizzy.
What the hell is a sphenoid bone you ask? Bueller, Bueller? Anyone??
.

It's located behind both eyes in the skull, right in the middle, ending up as the temple bone on either side.

The goal of this radiation is to shrink the tumor in this bone, which is pressing on his inner ear, optic nerve, and corotid artery.

It is highly destructive and aggressive, and is causing all kinds of havoc. Sunday the 22nd of October is the last Chemotherapy drug for this cycle, so it will be a good week to rest, eat out, live it up! If the tumor doesn't respond

like the doc wants, the radiation will be repeated. There really are good days and bad days. It's really weird the way that goes. Some days he can't get out of bed, other days he will be deep cleaning and cooking till 4 or 5 in the morning. It's 11:41 pm and he's in there making pot roast, home baked dinner rolls, pan gravy... mmmmm.

It doesn't seem like 3 months ago that Notbillybob and his Princepessa were in this produce department when they got a phone call
from the PCP and heard the worst news, the arm is broken, it's a pathologic fracture, a large lytic lesion, meaning multiple myeloma for certain. But 3 months have passed, halloween is here, then Thanksgiving.

Left Humerus

Three months later, arm fixed, finally on Chemo to fight this hellacious thing, feeling pretty thankful.

Pelvis

We got a really good doctor to replace the fired one. The new doc listens, is courteous, and we have trust right out of the gate. We met him in the hospital when we were in there in September. He made a bedside
visit,... never had one before. Pretty cool, though.

Fired

noreply@blogger.com (Unknown) — Mon, 04 Sep 2017 04:58:00 +0000

DISCLAIMER:

FOR TEN PLUS YEARS BOBBY HAS BEEN SEEING DOCTORS AT C.U. FOR END STAGE LIVER DISEASE AND NOW AT THE VERY HIGHLY HIGHLY ACCLAIMED CANCER CENTER FOR BONE MARROW CANCER.

99 PERCENT OF THE PEOPLE WE RUN INTO

ARE 110 PERCENT EXCELLENT IN EVERY WAY. IT IS A SAD THING WHEN WE STUMBLE INTO THE ENVIRONS OF A DOCTOR WHO IS A:

SELF AGRANDIZING SOLIBSISTIC WHIRLING DERVISH OF EGOCENTRIC OBNOXION,

BUT IT DOES HAPPEN FROM TIME TO TIME. WE CALL HIM :DOCTOR 'NO'

-PRINCEPESSA

Notbillybob went to see his hematologist/oncologist on Friday,with his lovely Princepessa and nephew Tate. We'll call the oncologist Doctor "NO"'. He seemed very nervous because he knew that he had blown it. He dropped the football, and the other team recovered, and ran it in for 3 touchdowns. He committed an error on a short fly ball, giving the opposing team a 3 run victory.
   3 runs...     3 tumors...

            three.....tumors...
            -------BRAIN TUMOR-------

------RIGHT SHOULDER---------

--------LEFT UPPER ARM---------

THREE PAINFUL TUMORS.

----------------------------------------------------------------

WHEN NOTBILLYBOB FIRST MET THIS DOCTOR FOR THE FIRST TIME LAST SEPTEMBER, HE SPECIFICALLY ASKED HIM TO LEAN FORWARD, BE SUSPICIOUS OF ANY FINDINGS, SEE ANY SUSPECT LESIONS AS CANCER UNTIL PROVEN OTHERWISE,

DON'T DROP ME

THROUGH THE CRACKS,

HE SAID...

--------------------------------------------------

He dropped Notbillybob right through the

Cracks------------------------------------------

Cracks-----------------------------------

------------- CRACKS-

When we entered the exam room (it was very unusual...a nurse usually takes vitals and asks all the usual questions- any changes in medication, any pain? have you had any falls etc ,but not this time)

DR. NO! was already in there. sitting at the computer trying to pull up Notbillybob's chart, films, etc

His body language was hilarious... arm flying all around, and he was squirming in his chair hunching over .

after surgery,with

titanium nail

Let me explain the cracks in detail--- The tumors in the right scull base, and left humerus came out of nowhere.

No one saw them coming,

but the tumor in his right shoulder was spotted by a radiologist back in October and represented a third tumor. Tumor number THREE!!! Multiple tumors, thus the name of this evil disease- MULTIPLE MYELOMA.

CLICK HEREIn the past, the disease wasn't diagnosed until a patient already had end stage organ damage. The thinking nowdays is that patients can have a much better outcome if it was caught early and treated early.

There is an acronym for the signs for     MultipleMyeloma
                      CRAB
         CRAB stands for=
C_high calcium in the blood.
R_renal failure, (dialysis) caused by high calcium
A_anemia
B_bone lesions,tumors,bone pain Part of the new criteria stated that if a patient
had more than one focal lesion on MRI that is at least 5 mm or greater in size, it would be considered a "myloma defining event" and the patient would be diagnosed as having multiple myeloma. At the time back in October, Notbillybob had one tumor measuring 20/13mm and had one removed which measured larger than 3 inches. These tumors were were in his body at the same time...but doctor "NO" didnt see it that way. A ridiculous argument.

Notbillybob had a tumor in his pelvis which had cracked when they did a biopsy in June 2016,

and rib.
The shoulder tumor, if taken seriously would have put him way over the set criteria. But the doctor didnt see it as a threat. It was only SUV max 3.5 suv=(standard uptake values) Now the bone is SUV max 8.5 and has fractured through and through. Totally destroyed. Causing severe pain. It hurt terribly and prevented lifting all winter long. He knew there was a lesion, had asked the doctor to start chemo therapy, but his answer in October was "NO!!,
"Why not ???

"because I'm the boss!!" Seriously, he actually said that!!!

"If I diagnose you with multiple myeloma I'll have to start chemo on you. If I start chemo now you'll be on it the rest of your life."

Notbillybob's primary care doctor drafted a letter asking for the doc to start chemo. Immediately.

Doctor "NO" said "NO"!

So, on Friday when Notbillybob pointed out the massive error the good doctor had made, he squirmed and responded with "What do you want me to do about it now?"

"do you still want me to be your doctor?

Can you guess the answer?

Not billybob said '"NO" and fired the doctor.

You see, the doctor thought HE was the boss.

But he was wrong. He was very very wrong.

People, sometimes we are

intimidated by our doctor,

Sometimes with reason...

but it is important to remember...

they didn't hire you.

You hired them.

YOU CAN FIRE THEM

Stay tuned!!!!

Pokerface

noreply@blogger.com (Unknown) — Sun, 20 Aug 2017 11:27:00 +0000

Pokerface.

Lester Diamond.

Totally useless.

Apologies to James Wood.

See all the cells?

These are plasma cells. They have immunoglobulins attached to them. They are kinda shaped like a Y.

The inside of the Y are heavy chains. Notbillybob has CANCER of the light chains. They are called Kappa light chains. There are also Lambda light chains but they arent cancerous in his case. Kappa light chains are on the outside. Malignant.

There are lot of people,
family and friends who are wondering about this, diagnosis,...what the hell is it?

so heres how it goes...

The myeloma cells are all identical. They are the ones with all the little dots.

They have little dots in them. It's called an eccentric nucleus.

They are cells gone wrong. Rogue

then they start bunching up just like a pile of cards.

Bunching, bunching until...they make a tumor. Then they stimulate bone eating cells called

osteoclasts . These cell get busy making holes, Normally these cells work together with cells called osteoblasts which are suppose to fill in the holes,

but the cancerous plasma cells disrupt them.

Then the tumor supresses the osteoblasts.The end result;

areas which the outer wall of a bone which is called "CORTICAL BONE" is either just paper thin or gone all together.

Bone in human and other mammal bodies is generally classified into two types 1: Cortical bone, also known as compact bone and 2) Trabecular bone, also known as cancellous or spongy bone

but it doesn't end there.

Besides

being thinned out,

the trabecular

bone (inside) is replaced by stacks of

clones of plasma

free light chains

it just moves in like

an unwanted house guest

and eats all your cheese popcorn,

but seriously, The destroyed bone leaves you with high calcium in your blood, which damages

the kidneys...leading to dialysis or worse...end organ damage.

liver, kidneys... and the tumors just keep popping up wherever....

have to fight this...

And to fight this they will use either radiation, or steroids which are called chemotherapy, but are much different than that which notbillybobs' dad had. Lenalidomide and Dexamethasone for round one

The goal is.... REMISSSION.

Now it is Sunday. He has been in here since thursday.
Time to fly this coop.

Notbillybob would LIKE TO THANK EACH AND EVERYONE WHO CAME TO VISIT...TOOT TOOT, JOE,
RACHEL !!!!...JEN!!!... MOM, ANDREA, KATIE!!!

...P R I N C E P E S S A...

AND EVERYONE WHO LEFT LIKES AND LOVE. HE LOVES YA BACK!!!!

"It's not Frankenshtine,

its Fraunkensteen!"

"oh, so then is it Froadrick?

"No,it's Fredrick. And you must be Egor...

"No, it's Eyegor!!!

"They told me

it was Igor"

"Well they wuuh wrong wunt thay"

"bwahahahahahahaha!"

SO,WHATS NEXT?

noreply@blogger.com (Unknown) — Sat, 19 Aug 2017 15:27:00 +0000

WHAT IS NEXT?

CHEMOTHERAPY?

                                                        OR RADIATION THERAPY?

OR DO NOTHING...

YIKES, DONT LIKE THAT ONE A WHOLE LOT.

Notbillybob has a lot to thinkabout the next

two weeks. He'll see his orthopedic surgeon then. get stitches out. Most likely going home today. Then again maybe not. Just saw the pain service and they said they dont want him in the ER tonight if we cant get hold of the pain.

It IS like a ROLLER COASTER!

Emotional as well as physical and financial.

No one really has any answers to the big questions. There is a lot of
'Risks out weigh the benefits.... and Benefits out weighing the risks...

There are statements like this;

"most of the time we like to see.....bla bla"

and 'There is something we can do to.... bla bla"

"We'd like to try and....bla. "

But mostly there is the "we just dont know for sure. There are risk factors any time we...bla bla ba bla."
What they are saying is

ANYTIME A SURGEON IS GOING TO CUT YOU WITH A 10 BLADE NO ONE HAS A CRYSTAL BALL.....

SAME FOR
MEDICATION.

AND

THE

BIG

QUESTION**********HOW LONG DO I HAVE?????

GOOD QUESTION. (not very easy to answer.)

NOTBILLYBOB STARTED OUT WITH A SINGLE TUMOR. TOOK LESTER DIAMOND OUT TWO YEARS AGO LAST MONTH.

THEN THEY FOUND LUCY IN THE SKY. (PELVIS.)

NOW THESE THREE MORE. CHANGED HIS DIAGNOSIS
FROM SOLITARY PLASMACYTOMA TO
MULTIPLE MYLOMA.   MM IS QUITE A DIFFERENT BEAST.

like yesterday for instance. He finally consented to a nerve block.
A very lovely senior nurse came in, pulled up a chair and explained the nerve block in great detail. It worked. He trusted her.
The anesthesia service from the surgery came up here to the 8th floor and stuck a long needle in his neck. They used an ultrasound
machine to see where it was going. Not painfull, but lots of pressure. I'm totally lyin here! It HURT...bigtime.
   But it worked. somewhat. The arm felt like a large
      piece of beef tenderloin.
Then a few hours later, in the middle of the night it WOKE UP.
   By now it is barking like a junkyard dog. WOOF!

                                   WOOF!!                 LOL!

                                                   WOOF???????

DEEP BREATHS

noreply@blogger.com (Unknown) — Fri, 18 Aug 2017 17:39:00 +0000

YESTERDAY...

After kissing Princepessa goodbye---mmmmWAH!     (you never know,    y know?
   he went for a ride through coriders, hallways, to the O.R.....


Deep breaths
Just take some deep breaths for me...

Frrreaking out on that operating table... 7 or 8 folks all busy each doing somthing different it seemed,The temp in there felt
like a walk in cooler. CCCCcccolddddddd!
The surgeon they call THE SHARK getting ready to freeze a section and cut away a piece of him he had lived with his whole life.Yeah, it was a 4x4 inch section
of bone, it was inside, he had never met it. but still, it belonged to him...BUT the bone was totally destroyed......

eaten away by a clump malignant plasma cells, all with the same face!!!!! Clones. A CLONE WAR right there in his upper arm. and pelvis...and scull...and shoulder blade. Lot of clones!!!!!!!!

We need Jedi knights!!!!     Call Anakin Skywalker and Obi-Wan Kenobi !!!!

Call DELTA SQUAD !!!!!!!!

Anway, back to earth, back to this operating room,where he was hoisted

onto this hard little table with a little rubber Donut for his head and pillows for under his legs.....like four feet off the floor...it was l a long way down...                                                                                   There were four nurses all trying to make him comfortable at the same time- how are your legs like this?? The anesthesiology resident trying to jam this cushy mask over his face trying to jam it tight to make a tight seal...    her doing that put him in a complete panic mode. The Mask smelled like the gas used for his eye surgery when he was 12-yrs old -- back in the seventies- I believe back then it was halothane or ether or even chloroform but

they all smell the same like brake fluid or dry cleaning fluid Auggggggggggggggg!!!!!!!!!!!.

      He finally said Cant she just knock me out now-PLEASE- put

me to sleep now I'm starting to feel -PANICKY- I can't swallow throat's too dry-STOPPPPP!!!!

       -- right then-----somebody ----JAMMED---- the corner of a wet washcloth into his mouth

and he calmed down a bit. At least they were listening to him... another nurse suddenly slathered his lips with a very slimy lip balm...----felt like that geletin that you see on a canned ham.CANNED HAM LIPS!!! HAHAHAHAHAHAHAHA......and he HATES greezy lips. Just ask Princepessa!!

      Then the anesthesiology attending- which is someone who has completed their residency- (although this was nothing like the TV show Grey's Anatomy. he and Princepessa used to wach it on netflix no one in there looked like Yang or George or especially Mc) put the mask back on and said okay here we go take some deep breaths fill your

lungs with oxygen we're going to give you some medicine in your IV you're going to feel a burning

sensation over your whole body and then you're going to wake up after your nap yikes , it WAS a tingling BURRRRRRNINNNNNGGGGG sensation. YOwwWwwww going dowwwwwwwwnnnnnnnuhhhhhh----------------------------------------------------------------------------------

then, just                     nothing.



---------------------------------------------------Are you having any pain, Mr Aragon...                                                                      -----------------------------------Mr Aragon says   is ISit done?--------------

yes sir , its done
Mr Aragon says "ill give you a hundred bucks for a drink of water."

AS FAR AS I KNOW........HE'S STILL WAITING.

From the frying pan into the fire

noreply@blogger.com (Unknown) — Wed, 16 Aug 2017 09:34:00 +0000

Notbillybob had just visited the radiology records dept. at Anschutz aka the "U", and was scurrying to make it to his hepatology appt on time, you know, reading while walking briskly, reading, skimming over the boring parts, yada yada, There was a hepatology appointment, followed immediately with an appointment with the pre-admissions clinic, but back to the radiology report...

He started reading the paper, wondering what the news would be...

66 minutes after IV tracer was administrated, bla bla, CT images were reconstructed in the axial, coronal and sagittal views...sure, yeah, width wise, lengthwise, and sideways... where is the news, where are the results of yesterdays scan? And then he saw the words on the paper, right at the bottom of the first page...h h holy crap! Can... not... breath, hearts... pounding...ringing in his ears...

Feeling faint, that metallic taste spreading in his mouth...

A NEW DESTRUCTIVE LESION IN THE RIGHT SCAPULA INCLUDING ANOTHER PATHOLIGIC FRACTURE THROUGH AND THROUGH THE BONE, ............

ANOTHER LESION, IN THE

THE GREATER SPHENOID WING

(THATS IN THE RIGHT SCULL BASE!!!), OBLITERATION OF THE RIGHT FORAMEN OVALE, FORAMEN SPINOSUM, AND THE PETROUS CAROTID CANAL.......CAROTID????

"> THE GREATER SPHENOID WING IS A BONE

RIGHT IN THE BOTTOM OF THE SCULL RIGHT BEHIND THE EYES....HOLY SHIT.....(BROKEN SHARDS OF BONE RIGHT ON TOP OF HIS BRAIN...TOUCHING IT...

.......WTF..... GONNA

FAINT

RIGHT THERE

IN THE ELEVATOR

BETWEEN THE 3RD AND 4TH FLOORS...

He and Princepessa had to sit down on a bench in the hall to catch thier breath and read it again, slooowly,

" please google this word, hun...

GREATER SPHENOID WING........

please...google... it... his mouth full of cottenballs suddenly...

There's been a lot of pain in the right shoulder, sure but he thought it was from using only the right hand and arm. But there was a crack sound last week trying to push up off the bed. Now he's been getting Principessa to help him get out of bed. But it explains the cracking noise. This marks the third bone he's broken doing something normal.

Princepessa is sobbing... she's been helping him get out of bed these days. doing ALL the driving, cooking, laundry,

but then

She's been doing everything since he broke his left arm, all though he did mow the lawn last week. But he didn't know it was broken. So, where do we go from here? I guess take one thing at a time, and don't look too far forward or it will drive him crazy. He was rather worried about Thursdays surgery, but now it seems minor compared to the fight ahead. Four lesions. Wondering if this will change his chemo tharapy drugs. Drugs which cost ...wait for it....

$13,000.59!!!!!

59 put in there for levity...but really, 13 grand?????????

Stay tuned and thanks for all the moral support kind words and your thoughts and prayers. It does help a lot. Billybob for Notbillybob 3:31 am Tuesday July16,

2017.

Goodby Lola, Hello Bobby Rebar

noreply@blogger.com (Unknown) — Fri, 11 Aug 2017 18:21:00 +0000

Meet Lola. She thinks every thing is cool, but it aint. Leastwise not for her.

Not even cool at all. See, come next thursday a very talented and well known orthopedic surgeon (the call him The Shark) is going to rip Lola from her roost, and replace her wit rebar.
Das right, folks , I said REEBARRRRR!!!!!!!!
Ba-baa-buhreeBARRRRRR!.

Lola is made from a collection of cloned plasma cells called kappa light chains.

Kappa light chains are malignant cancer cells which secrete a substance which activates osteoclasts, which are a large multinucleate bone cells that absorbs bone... destroys bone,...EATS LARGE HOLES IN BONE...Normally, they work together with osteoblasts,
a cell that secretes the matrix for bone formation...however kappa light chains
supress the osteoclasts. The end result is bone which is full of holes and has a moth eaten appearance. These lesions are called lytic lesions. (lysis means destruction).

So, after Lola is removed and Bobbys arm (Notbillybob) is put back
together with bone cement (actually it is really plexiglass PMMA,used for around 50
years for orthopedic work...these days on joint replacements) baa baa buh reebaa!! After all that, they will begin the chemo...Bobby (Notbillybob) now has been diagnosed with multiple myeloma...

but that and the chemo is another post...signing off for now Billybob.

You're a mean one, Lola...

noreply@blogger.com (Unknown) — Sun, 30 Jul 2017 09:11:00 +0000

Right around a year ago found me and the rest of

my friends in here fighting a war over control of
Notbillybob. Let me explain. I am the liver. Notbillybob is a man named Bobby.

I call him Notbillybob. Lester Diamond was a tumor in our ribcage. He is

gone now. Now there are two more tumors. One

pelvic tumor called Lucy (in the sky with

diamonds)who had a needle biopsy

last summer. You may recall the previous post called "Eenie meanie miney moe"...

Anyway,Last week Notbillybob tripped over the

garden hose.

He landed without falling BUT there

was a loud *pop*. Then screaming and howling in

pain . Meet Lola. She is a plasmacytoma myloma) located in the upper

left arm...also known as a "transverse fracture

across the proximal humeral metadiaphyseal

junction". Whoo hoo!!! IS THAT A MOUTHFUL OR WHAT

?!?!?!? META-DIA-FI-SEEL WHAAA??? All that is to

say that the arm bone is BUSTED. Big time. Look away now if you're squeemish.

Damn

bone cancer. Surgery is next on the agenda. Some

pretty scary words were uttered Friday in the

Ortho clinic at the UCHSC Anschutz medical center. (University of Colorado hospital) Words like "bone cement", and steel rods, screws, "lytic lesions"...out of network, not covered... you need to pay cash for your MRI...

BWAHAHAHAHAHAHAHAHA!!!!!! UP AND DOWN WE GOES, WHERE THIS ROLLER COASTER STOPS NOBODY KNOWS!!

damn wild ride!

Eenie meanie miney moe

noreply@blogger.com (Unknown) — Tue, 28 Jun 2016 16:38:00 +0000

Eenie meanie miney moe, catch a liver by the toe, if e hollers make im pay bilirubin every day...
We did get the results of the pelvis super torture biopsy from the 15th of June.

Phenotypic Abnormality Found.

Leukemia/Lymphoma phenotyping report-

A phenotypically abnormal population is detected. A Kappa monotypic plasma cell population is noted, positive for antibodies CD38, CD138.
The findings are consistant for a

PLASMA CELL NEOPLASM.

MALIGNANCY.

So, What's next? Well, There are three choices. Three doors. Let's make a deal.

Door number one... do nothing.
I know I know, this door is the one every one swears they will choose if they ever get THE CANCER (see Lewellen Moss' mother in law in "No country for old men" (I's 100 degrees out here, don't know anyone in El Paso and I got THE CANCER)

Door number two, Another round of Radiation. Yeesh. Anyone familiar with Bobby's "two month nap" will see the downside of this one.

Door number three, Chemo. Not exactly the same as the chemo from yesterday. There are dozens of new drugs to treat Plasma cell cancer, many of them are cortico steroids. It's still chemo, though.

In the mean time, another bone marrow biopsy is scheduled for the 7th.

These are truly awful. Even though I could swear I heard "never never never again...
The problem is that even though they can numb you, they cant numb the pressure change when the biopsy needle goes through the bone in to the marrow. When air hits the marrow. Feels like a BASEBALL BAT.
Why yes I have been hit with a bat, he says.
At age 11, little brother hit Bobby with a ball bat. Louisville slugger. In the forehead.

Time for this wacky liver to go. Nice we could chat.

NOTBILLYBOB thanks you for your outpouring of well wishes and prayers. Much appreciated. Billybob, 6-28-16

Biopsy Day-(Thank God it's not a LIVER biopsy...)

noreply@blogger.com (Unknown) — Wed, 15 Jun 2016 12:56:00 +0000

Today is the long awaited, dreaded biopsy day. NOTBILLYBOB's Ortho-Oncologist Dr Shark requested this back in January, but complications as well as second opinions and consultations as well as a bad cold and hyper volemic crisis(water in the lungs) have delayed it. But no more. The procedure will involve an early morning lab test to see about clotting factors and platelet count. This happens around 9:00 am and will give the team time to do a blood platelet/plasma transfusion. If the platelet count is under 50, then they will add platelets and plasma. Normal is 150-500. NOTBILLYBOB usually has a count in the 35 to 45 range. Whether or not this is really low depends upon which doctor is weighing in. A Hepatologist routinely sees patients with platelets in the 50s.
A blood cancer doc sees patients down in the teens, and wont panic until they go below 10. A primary care doc, pain specialist, pulmonologist, cardiologist, etc is freakin out under the 100 mark. The dentist... well we'll just leave him out of this equation. You need only mention the phrase "Hemophilia" and they run.
So, another mystery. Is the tumor in NOTBILLYBOB's Ischial tuberosity benign... or another plasmacytoma,,,

The PET CT scan last week showed the same cancer in the left rib cage...Not entirely gone. It showed that the tumor in the pelvis had grown, but only slightly. Surely they will say that it is within the "margin of error, and call it totally stable. Only it doesnt FEEL stable. Yeesh. Bobby's wacky liver... signin out. Roger. Wilco. See ya.

Me Moon

noreply@blogger.com (Unknown) — Wed, 28 Jan 2015 18:36:00 +0000

The night of the PET/CT scan,waiting for the radioactive sugar to spread out.

Hello, Billybob here. This is The story of the man in the moon, or better yet the moon in the man. Eight days after the final radiation treatment, Bobby was feelin Baaaad. So bad, he threw in the towel and called his doctor before maybe going to the ER. The doctor called in a prescription for a chemo-therapy drug commonly used to treat multiple myeloma. When people hear the word chemo-therapy they automatically think of deadly poisons, but things are changing at lightening speed these days. See this drug is called dexamethasone, and is a a cortico-steroid. It has amazing anti-cancer properties, as well as anti inflammatory properties. The assumption was that the post radiation inflammation inside his organ cavity was causing pain, bad pain. Pain that increased every day by 5% until it was 9 on the Wong- Baker pain scale. You know the ten smiley faces? Wong- Baker.

So, he began to eat those dexamethasone pills, one a day
each day feeling more and bloated...kind of like eating the moon...

Click here to read more about this novel aproach to treating multiple myeloma cancer.
So, eight days, eight pills later, Bobby is feeling like he ate the whole damn moon. Point of fact, he LOOKS like he ate the moon. The scale which had been reading 250+ (50 pounds weightloss since summer- was now all the way past 270!!!! It was just pure coincidence that later this same day he had a PET/CT scan-- the night before a routine follow up with his physicians assistant for his hepatologist (his hepatologist is the Director of the Liver Transplant program at University of Colorado hospital)so he sees this lady, whom is very very excellent at her job, and shares with her the moon story, and the fact that according to the PET/CT, he has developed full blown moderate sized ascites in the abdomen and pelvis.

He knew it the very moment he pulled the disk up on his computer. He could see a band around me, the LIVER and a cloudy appearance in the organ cavity, aka peritoneal cavity. In a person with end stage liver disease, this is a standard sign of fulmanant hepatic failure-AKA liver failure.
L I V E R F A I L U R E !
SCARED SHITLESS is not an over statement. Bobby (aka NOTBILLYBOB) and Sharon are thinking ?!?! What have we done?? We killed Billybob the wacky liver!!
We went and killed Billybob!
Well, I assure you they didn't kill me. They just tipped me over a bit. The physician's assistant ordered two diuretics (water pills) which are supposed to flush salt from the kidney brothers, and with the salt goes the water. But it is a rollercoaster, like every thing on this blog. Rollercoasters everywhere. Up and down, a-spinning all around. Wooooo weeeeeee!!

So, the pain from the inflammation kind of wins for now, but hopefully soon it will subside.

This morning-feeling green.

The good news is- Lost 20 lbs in 7 days!!!! 254!! Back on a low sodium diet. Bummer. I'll update you soon, Billybob the wackyliver

PS. The radiation treatment seemed to be working-the amount of FDG uptake in the area of the tumor has decreased quite a bit. FDG (Floro-deoxy-glucose) is radioactive sugar, which once injected, sticks to cancer cells so that the doctor can see how much cancer is present and how high grade it is. The PET/CT results were pretty positive in that aspect, but there are more areas to investigate now than there were in October. Rome wadnt built in a day. One test at a time. One tumor at a time.
Next up: Pelvis MRI and possible biopsy. B

Today-is the post radiation PET-CT scan

noreply@blogger.com (Unknown) — Tue, 20 Jan 2015 19:48:00 +0000

Today-the post radiation PET-CT scan

Today-is the post radiation treatment PET/CT scan.
So, to recap, the techs inject a tracer called Fluorodeoxyglucose, or FDG for short. Cancer cells like sugar, and this tracer is radiated sugar. It sticks to cancer. Lights it up. There are some parts it wont work on.
The brain, thyroid, heart, kidneys, liver, spleen, bladder and digestive tract. That leaves a bunch of places it will work on. Follow up later this week.

Graduation Day Celebration January 1, 2015

noreply@blogger.com (Unknown) — Fri, 02 Jan 2015 08:55:00 +0000

Graduation Day

LINAC U

You'd think that 25 treatments wouldn't amount to much of anything. It doesn't sound like a lot.

...25 trips to the hospital. We were wrong. We started the week before Thanksgiving after a month long delay because we got off on the wrong foot. The initial conference with the oncologist was way way rushed. After the nightmarish bone marrow biopsy, we met and he went through the 10 minute crash course on multiple myeloma, which left Notbillybob's head spinning...could we get a second opinion? What about the tumor on the outside?(The one the surgeon left alone) What about the tumor in the pelvis? Other side of the ribcage? Long story short, to see the oncologist for a second visit took a month...Then Notbillybob (bobby) caught THE MOTHER OF ALL COLDS. 29 days of fever and coughing blood. Sharon called the hospital... should we just get started and play it by ear? No. Wait until the cold symptoms subside. They wanted a commitment, with as few absences as possible, so we waited. The cold slowly subsided, They put us in the schedule... and then we started, and little by little we got into our groove. I say WE because Notbillybob's wife, Sharon drove most days. I was just along for the ride. Well, after 10 treatments, the tiredness set in. Especially for her. Like a new part time job. Sandwiches from home for lunch, (who can afford to spend all the Christmas money on rubber chicken? Then the pain. Notbillybob feeling like a roasted ham most days. Kind of like a sun burn inside your guts. He made a big mistake in eating jalapenos one night. Ooh, the burn. So, they asked the doc if the stomach was getting radiation. They said "lets pull up your treatment plan... Yes, see here, inside this red line. The treatment plan showed that it was. The innermost red line is the most radiation, the outer one is the least. The green one is in the middle. A good part of the stomach is even inside the blue line.

The pain was accounted for. They told us that they were also concerned with his platelet count. It was going down again. Down to 37! (Low is 150) It has since stabilized at 40. The thing is that the white cells, red cells, hematocrit are all low. Way low. Bilirubin is elevated. INR is elevated. Not billybob began wearing a mask to treatments. Don't need cooties at a time like this.
Then the really cold weather set in. I know, I know- it doesn't really cause colds and "death of pneumonia" like our moms used to say, but when you have cancer of the immune cells, and then your white cell count goes in the toilet as well...
Notbillybob is going to stay a hermit for the foreseeable future.
But SMILE! Besides it being NFL playoff time,
New Years eve was treatment number 25. Graduation day! Graduation from LINAC U!
(LINAC is a Linear Accelerator, an IMRT radiation therapy machine)
Interesting video about how it works. The collimator leaves open and close to the exact shape of the tumor, in order to spare good tissue while destroying cancer tissue. This used to be done manually in the past with hand made lead plates. Very slow and not so accurate.

PLEASE CLICK ON THE VIDEO IN ORDER TO SEE IT
WHOLE WITHOUT THE RIGHT SIDE CUT OFF

Below, she explains how a multi leaf collimator is much much more accurate. Also, the time on the treatment platform is much reduced.

How a Linear Accelerator (or LINAC) Works

noreply@blogger.com (Unknown) — Fri, 02 Jan 2015 06:28:00 +0000

One down, twenty four to go

noreply@blogger.com (Unknown) — Wed, 19 Nov 2014 13:30:00 +0000

Hello, Facebook group for Billybobs wildride! This is Billybob, the worlds wackiest liver reporting the latest on the bone tumor aka Lester Diamond.
Yesterday was Notbillybob's first radiation treatment at the CU cancer center.

25 in total have been planned, one down,twenty four to go.Once a day, every day through Christmas.

Marked and ready

This years' Christmas present from Sharon, a 1965 vintage Soviet NBC warfare watch

Molinja 3602, made in USSR

If you were on vacation back on July 23rd this year, or in a coma, Bobby aka "Notbillybob" had a chicken leg sized tumor
removed from his ribcage. It started out as a broken rib on December 8th, 2007. He simply rolled over in bed on his left side, and SNAP! They eventually named it Lester. It turned out that Lester was a Plasmacytoma, which is a rather bizarre tumor made from malignant plasma cells. It is incurable, but can be treated and a good outcome is common these days. Not so just a few years back. Even a recently as 10 years ago, this was a pretty nasty disease as diseases go, at least according to several of his doctors. Modern medicine has found ways to fight this cancer, and the latest clinical trials are yielding pretty good results. In the case of Lester Diamond, though, things are a bit complicated. There are some strange signs that suggest that the cancer might be far more wide spread than previously thought. 6 months from now, we will know a hell of a lot more. First, an MRI of an additional tumor in the pelvis, then possibly a biopsy. Then several soft tissue tumors have to come out and go to the pathologist.
This cancer "hides like no other" according to the head bone marrow oncologist at the "U". Then there is a possibility that Notbillybob is a "non secretor" or worse, a "non producer". That would mean in the case of a non secreter that the abnormal cells only live for 6 hours or less , making it very very hard to detect in blood or urine samples. A non producer simply makes no abnormal cells that science can currently detect, but only show up as an after thought as actual symptoms, such as elevated calcium, leading to kidney failure, lytic lesions (destructive lesions) in the skeleton, which hurt really bad and can cause central spinal collapse. Ouch.
You know how the construction crews are always tearing big giant
holes in the street? Well, imagine what would happen if they never came back to patch them up? In the case of plasma cell cancer, the process of removing old bone and filling the holes up with new growth cells gets disrupted. The holes are made, but never filled back in. It's called "uncoupling".
A type of bone resorption cells called "osteoclasts" reabsorbs bone , and their counterparts called "osteoblasts" are supposed to create new bone. But in the case of plasmacytomas the osteoblasts go on strike.
That's what happened to Notbillybob's rib... over TWELVE YEARS AGO.

This is a 3d CT scan of his ribcage taken on 6-8-2007.

To date, no radiologist has seen this 3D view. The regular view, called the "axial" view shows some tiny itty bitty pin holes. The radiologst who read it initially totally dropped the ball. No, he fumbled it...it was returned for a touchdown.
Then of course as always, Notbillybob has a complicated case anyway. Nothing is ever simple. Initial test results are either mild, or negative. Then the other shoe drops.

This one still has the doctors scratching their heads.They use words like 'very rare', or 'bizarre', and in some cases they just drop their pens when told that the first symptoms were on an Elk hunting trip in Oak Creek Colorado, September, 2002. Then the first hospitalization was Februrary 13, 2003 for chest pain while at work... his first ambulance ride. I mean, it's a long long time ago! It also explains a lot of bizarre health related things.
All the kings horses and all the kings men include:
A neuro oncologist, orthopedic oncologist, 2 radiation oncologists, and a bone marrow transplant oncologist , two thoracic surgeons. a nutritionist, and a chaplain.

So, we will update as it goes for those interested. Happy holidays and Merry Christmas!!!! And may your osteoclasts and osteoblasts be ever united!!!!

The PET scan results are in... and the winner is...

noreply@blogger.com (Unknown) — Thu, 28 Aug 2014 11:02:00 +0000

There is good news and there is not so good news.

First the good news. Myeloma cells throughout the body were NOT found. It would have been a gi-normous surprise if they were, given the negative bone marrow biopsy report, blood tests, and urine electrophoresis.
----------------------------------------------------------------------------------------------------
We

let

that

sink

in

just

for

a

moment.

That was the good news and it is indeed very very good.
But Life is not always cherries. (Cherry season is over in Colorado.) :-(

Sometimes it's also the pits. Now for the bad news.

The bad news is that another lesion was discovered.
The pet scan found another lesion hidden away in the very bottom of the pelvis. A bad place. Close to where the two sides of the pelvis meet at the pubic bone...s.?

"A lesion in the right inferior pubic ramus with a sclerotic rim, and mild FDG uptake-SUV max 3.1" it reads.

FDG is what they call the radioactive sugar. There was only mild uptake. No bright orange to indicate life threatening emergency. But-the lesion has a sclerotic margin... that means it has a shell. Like an egg. A hollow bubble in the bone. A little egg from HELL. With Lester's ugly face on it.

Damn these lytic lesions.

Only we might have to find a new name for this one. The lesion on the rib was always thought to be 'benign' because it didn't HAVE a sclerotic rim.

The oncologist said that this type of cancer "hides like no other." Now we get to see exactly what he meant.
The area where the rib tumor was also lit up, and additional tumor couldn't be ruled out.

There are cancer cells where they weren't expected to be. They knew that the surgical "bed" would light up, but outside the chest cavity and near the incision there are areas of concern.

A special radiation doctor is going to address this next week. No waiting.

Next: Radiation treatments and monthly blood draws.
Another PET scan around Thanksgiving. Oh, and not too forget...a visit to the liver transplant clinic. We don't want the hepatology folks to get to missing us too much! Heh.
Later, Billybob

A quick note from Notbillybob, aka Bobby-
thank you for visiting, reading, and your thoughts and prayers for Dad and the family in this difficult time. I started this blog in the spring of 2006 after being diagnosed with end stage liver disease, portal hypertension, hepatopulmonary syndrome, and hepatic encephalopathy. I did it to avoid having to repeat over and over which doctor said what and so on and so on. When I first developed upper right quad pain in summer 2006, Sharon sugested we give it a name. Billybob got his identity. Later it was determined that the liver capsule is bulging out in front and causing the pain, making it a fitting name.

In 2007, Billybob's wildride was name by the Fox news health network as one of ten blogs to watch in 2008. After Sharon had three surgeries in three consecutive years, and Lester came to stay, I let the blog just sit for way too long. A special thank you to all those at the Liver cirrhosis support group at Yahoo for all of you support over the years. I hope that this blog is informative without putting you to sleep or making you feel like slitting your wrists or jumping off of tall buildings. On a serious note, with birthday number 8 looming just days away, I want to thank my AA sponsor , and that program for doing what I never thought possible, re-inventing me.
Most of all, thank you, Sharon for taking care of me, and showing what Judge Simons meant when he said "in sickness and in health and , for richer for poorer...".
Love, John Robert Aragon, 8-28-2014

Today, a PET scan at UCHSC,aka the "U"

noreply@blogger.com (Unknown) — Mon, 25 Aug 2014 13:46:00 +0000

Today our Notbillybob as I call him is on his way with Sharon to the "U" for a PET scan, or Positron emission tomography. They will inject radioactive SUGAR. This sugar is supposed to stick to any cancer cells. This will make GLOWWWWWW.

If there are more Lester Diamond the plasmacytoma from HELL copies, they will be found. We think.

This is supposed to find clumps.

And lumps.

As usual, click the images!

More on this later.

Fee Fi Fo Fum, I'll Grind yer Bones...

noreply@blogger.com (Unknown) — Wed, 13 Aug 2014 21:49:00 +0000

To obtain the necessary diagnostic information...

AS ALLWAYS, PLEASE CLICK ON IMAGES FOR FULL SIZE AND EFFECT

PLEASE CLICK ON IMAGES FOR FULL SIZE AND EFFECT

Notbillybob was at the "U" for the dreaded bone marrow biopsy yesterday.

PLEASE CLICK ON IMAGES FOR FULL SIZE AND EFFECT

He didn't publish this post then because of an exquisite little inconvenience known as... STINKFOOT !!! SCRATCH THAT, SCRATCH THAT!. Sorry, there's that Frank Zappa song again. I think it's from the album "Apostrophe". You really should check out Frank Zappa on this one. Seriously. Here's a link for you.
The real reason he wasn't around all day yesterday is a pill known as Flexerill. Or it.s generic term, Cyclobenzaprine,a mild muscle relaxer. This pre-medication was to used to relax the patient for the procedure. Whoa daddy! Relax is not really an accurate term. Howz about KNOCK OUT? Kids, don't try this at home. And by the way, what do they consider a strong muscle relaxer?? Oh, yeah, I remember detox. Valium's big brother, Librium could be called a strong muscle relaxer, but it would have anesthetized our guy before lunchtime, and left him unconscious.

As a result, the whole thing (day) is a blur, except for the part when the nurse practitioner took the bone sample. Here is an illustration which describes the event. A picture is worth a thousand words as they say...

But it's all done. Wow. There are brave people whom have had many of these! I cannot even imagine.
Let.s say that it is not something one ever wants to do again... EVER.

PLEASE CLICK ON IMAGES FOR FULL SIZE AND EFFECT
The upside in all this is that even though the procedure was done in a sterile fashion, Sharon was STILL allowed to sit next to and hold Notbillybob's hand. She scratched his goatee and talked about the cats and distracted him. Kudos, Sharon. You're the hero of the day.
And the NP and CNA They were excellent as all the staff here have been.

THANK YOU, SHARON!!

Anyone curious who wants to see the procedure on video, here is a link to a youtube video (not ours)
but do not watch if you don't want to, by all means. VIEWER DISCRETION IS ADVISED

P.S.
for thos who are interested iin CG, here is the red wax basemesh of himself that Notbillybob did with Zbrush...

PLEASE CLICK ON IMAGES FOR FULL SIZE AND EFFECT

exploded view of skeleton

Acceptance is the key

noreply@blogger.com (Unknown) — Fri, 01 Aug 2014 12:01:00 +0000

PLEASE CLICK PICTURE TO ENLARGE

COLLAGE in main hall at the C.U. Cancer Center Anshutz outpattient pavillion

And acceptance is the answer to all my problems today. When I am disturbed, it is because I find some person, place, thing or situation -- some fact of my life -- unacceptable to me, and I can find no serenity until I accept that person, place, thing or situation as being exactly the way it is supposed to be at this moment.
Nothing, absolutely nothing happens in God's world by mistake. Unless I accept life completely on life's terms, I cannot be happy. I need to concentrate not so much on what needs to be changed in the world as on what needs to be changed in me and in my attitudes.

April 2006 Ardis on the liver transplant ward @ UCHSC

For me, serenity began when I learned to distinguish between those things that I could change and those I could not. When I admitted that there were people, places, things, and situations over which I was totally powerless, those things began to lose their power over me. I learned that everyone has the right to make their own mistakes, and learn from them, without my interference, judgement, or assistance!

The key to my serenity is acceptance. But "acceptance" does not mean that I have to like it, condone it, or even ignore it. What it does mean is I am powerless to do anything about it... and I have to accept that fact.

Nor does it mean that I have to accept "unacceptable behavior." Today I have choices. I no longer have to accept abuse in any form. I can choose to walk away, even if it means stepping out into the unknown. I no longer have to fear "change" or the unknown. I can merely accept it as part of the journey.
I spent years trying to change things in my life over which I was powerless, but did not know it. I threatened, scolded, manipulated, coerced, pleaded, begged, pouted, bribed and generally tried everything I could to make the situation better -- only watch as things always got progressively worse.
I spent so much time trying to change the things I could not change, it never once occurred to me to simply accept them as they were.
Now when things in my life are not going the way I planned them, or downright bad things happen, I can remind myself that whatever is going on is not happening by accident. There's a reason for it and it is not always meant for me to know what that reason is.
That change in attitude has been the key to happiness for me. I know I am not the only who has found that serenity.

-Page 449 (first 3 editions, pg. 417 in the 4th edition) of Alcoholics Anonymous or The Big Book as it is widely known-

Turns out Lester was a baaad lesion. A PLASMACYTOMA

noreply@blogger.com (Unknown) — Wed, 30 Jul 2014 15:29:00 +0000

Turns out, Lester was a baaaad lesion. He was the result of an extremely rare malignant plasma cell tumor called a Plasmacytoma.

It was a CANCER after all.

The phone call came around noon yesterday. It was the Highly talented and well known thoracic surgeon, and he had the report in his hand. Was this a good time? He encouraged Notbillybob to get a pen and paper and write down the words, even spelled them out for him. P-L-A-S-M-A-C-Y-T-O-M-A....
M-Y-E-L-O-M-A...

After reading about these words all day, Notbillybob finally sat down at his computer to post this on the Facebook group. There are way more questions now than answers. Multiple myloma is well known, being the second most prevalent form of   hematological malignancy in the U.S.

So, click the links. Read all about it. Remember, Notbillybob HAD a lytic lesion in his left seventh anterior (front) rib. Last Tuesday it was yanked out. He might still HAVE a multiple myloma present. "The rib tumor could be a MARKER of more disease..." said the Thoracic surgeon. Myloma usually has three major clues that it is present.
#1 Kidney failure. Well, we don't have that.
#2 high serum calcium reading. Well, we don't have that either.
#3 Aplastic anemia. Well, no one has said for sure, but Notbillybob can read, and followed every morning blood draw while in the hospital. (They have a thing called "My Health Connection". There's even an Android app in the Play Store for it. Seriously!!) The problems plagueing him when he went in-namely low platelets, low hemoglobin, low hematocrit, low white blood cells, and low red blood cells...all point to aplastic anemia. Google search these readings all being low and the answer you get is an exquisite little inconvienince known as...
STINKFOOT! No, wait, that's a Frank Zappa song. You get aplastic anemia. They are all low at the same time.

The Hematology and or Oncology departments might call soon to make a follow up appointment.

Here is a short list of the recent ailments Notbillybob sought medical treatment for, which are directly related to this cancer.

Dequervain's syndrom of the wrist    - related

Dry eyes                  -related

headaches            -related

fatigue-related

shortness of breath     -related

nausea                -related

Dizzyness causing falls     -related

Severe drop in platelets thought to be liver related-now believed to be related to plasmacytoma.

Petchae/purpura rash      -related

Who'd uh thunk, huh? Well, off they go back to the U this rainy morning. The chest tube dressing is draining, so they want to see him.