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!!!!

                                      

 

Pokerface

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!"