The Wild Ride Has Come to an End

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?

 
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!

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

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

 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...

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

 

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!!!!