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...
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,
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.
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?"
Solitary plasmacytoma is a large solitary focus of plasma cell proliferation.
This tumor has a median patient age of approximately 10 years younger than multiple myeloma.
Pain is the most common symptom. However, if the myeloma occurs in the spine, it will usually present with fast developing paraplegia and gibbous deformity due to the vertebral collapse.
Liver Animation
Portal Lobule- amazing science
Wildride---
WildRide-
F.A Q.
About me- Billybob
A Liver. A crazy, wacky liver. Living with my share of scars, but who doesn't? I don't want to bore you with all that, not when there's bone tumors, and De Quervain's tenosinovitis, not to mention this runaway arthritis stuff. Compared to all that, it seems like we have it not too bad down here in liverland.
Symptoms of Cirrhois of the liver-Billybob's troublesome condition
This is 'Not Billybob'- (bobby) where Billybob lives
Not feeling my best these days.
The Architecture of the Liver
The rib tumor
lytic lesion of the anterolateral left seventh rib
You'd think that 25 radiation 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 of a bad bad flu like cold I developed. They wanted a commitment, with as few absences as possible, so we waited. The coughing up blood and fevers subsided, then we started, and got 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. Notbillybob feeling like a roast 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!
New Years eve was treatment number 25. Graduation day! Graduation from LINAC U!
(LINAC is a Linear Accelerator, an IMRT radiation therapy machine)
The creator of Theme Planet is Michael Sorrmann, one of the world's finest digital artists. Bobby fell in love with this short film during endless Google searches for roller coaster tracks, and a way to describe the " wild ride"
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Bobby's wife Sharon had her long awaited posterior fossa decompression surgery June 12, 2006. The surgery has not yet had the desired effect of curing a 11 year long headache, a result of Chiari malformation and Ehlers Danlose syndrome.
Falling down is also a gift
Annika is the worlds bravest girl, Having survived a third liver transplant. Moreena, her mother writes this blog, and it is Bobby's favorite
Live Out Loud
My journey with the struggles of Chiari Malformation
DAANT
DAANT Miracle Aimee, a liver transplant survivor.
The real life
Nancy is an awesome liver transplant survivor.
Transplant Headquarters
Manu Varma
Had a kidney transplant in 2000, watched the field of transplantation swirl around me before and after, decided to start a blog about it.
HOW CAN I KEEP FROM SINGING?
Susan, a young mother writes about moving forward after a struggle with childhood illness, and ultimate loss and reminds us that this is just the middle of the night, not the end.
A MIDWIVE'S TALE
Live , Love, Laugh
Lace writes this blog about her brain tail, and is a Chiari survivor.
Chiari Malformation Blog
A brave fighter, Keesha illustrates her Journey through 14 surgeries. Ehlers-Danlos Syndrome, Tethered Cord Syndrome, Thoracic Outlet Syndrome have led her to become a patient advocacy specialist extraordinare.
Bobby's favorite nurseblogs
EMS blogs
Dr Au
Angel of death (c) 2004 Kristoffer Frisk is an artist who lives in a small town in northern Sweden called Harnosand. He is Bobby's favorite artist. This picture "the angel of death" is not a scary thing to Bobby, but rather a fact of life and reminder of one possible road, but not the current one. The current one is the road to a transplant, and an extension of his contract on earth.
Cracks------------------------------------------
Not billybob said '"NO" and fired the doctor.
You see, the doctor thought HE was the boss. 
