Each day, Prometheus would be tormented by Zeus’ eagle as it tore at his immortal flesh and tried to devour his liver. Each night, as the frost bit it’s way into his sleep, the torn flesh would mend so the eagle could begin anew at the first touch of Eos (the Dawn). Isn't it strange how an ancient civilization knew of my potential healing power? Who were these Greeks, and did they have baklava and calamata olives back then? It is funny that the magic substance in the movie 'My big fat greek wedding', windex is ammonia, the bane of Bobby's brain. But Bobby and Sharon have adjusted by eating much more vegetables around here. The health food store Whole foods is getting all the money the liquor store used to. They do have bakalava, and 100 types of calamata olives. Every week, Sharon and Bobby go and stock up on dried fruit, salt free corn chips, the best gyoza in the world, (and that includes the little yakitori shop Iseya in KichiJoji , Tokyo), and the yummy low sodium organic peanut butter cereal. Bobby first found these cereals because Ardis needed gluten free everything. But this cereal rocks. Mister stomach loves it. Now if we could find a way to keep Spleen Mcqueen quiet. Then there would be some peace around here. Yeah I know, my capsule is not blameless, but the racket with the big ol noisy spleen, the noggin, mister colon, well it's just a rowdy mess. Speaking of which, these Greeks have morphine named after their God, Morpheus, the God of dreams. Hmm...Maybe this is all just a dream.
Bobby had a gig down in lower downtown on June 16, a Friday night. Only his third gig as a country western drummer. The band's name was Cars n Trucks. It was a great gig. In the morning, noticing a sharp stabbing in his right side, he got up, got dressed, and headed out to go over Ardis' apartment and get her up, cleaned up, fed, walk the dog, fix her something gluten free, stock all the cupboards with schnapps, and make sure her New Grist stock was full.New Grist is a new gluten free beer. Made with sorghum and rice. Very tasty. Her ceiliac's disease
rash, dermatitis herpitaformis had virtually disappeared. Bobby noticed a tugging sensation in his side. A fullness. Later that day, the tugging feeling turned into a horrible painful feeling like a cramp. He called Tom to ask him if livers could hurt, but Tom thought maybe Bobby had just pulled a muscle. Ardis greeted him as always with a smile, and they talked about how well the little bonsai trees he had bought her were doing. He had gone to a special nursery to buy her 5 mature trees, each no more than 7 inches tall. He made sure she had something or dinner she could stick in the microwave, moved 6 beers from the case to the fridge, and walked the dog one more time. He always walked the dog first and last because he wouldn't be over here until morning, and the scenario would repeat itself over and over every day. But 10 days later, he came after work, and she hadn't done very well getting to the bathroom. At this point Sharon had bought her 4 sets of sheets, (with Ardis' money from SSDI) and he just made up the bed with a fresh set, and put her soiled ones into a bag to take home. Her mental status being so poor, he did the routine diaper check, and realized he had a daunting task ahead, because she was taking the powerful laxative lactulose every 6 hours for encephalopathy, had made the mother of all messes, and did the best she could to change herself, but she was not cleaned up, and she needed some serious perenial care in order to not get severely sick. So, he went about the task the best he could and she hollered, and moaned, but he had her bottom spic and span 45 minutes later. While he was cleaning her up, he asked her why couldn't he check into some kind of nursing care for her, but all he got was" don't you have any heart?". This was repeated for 4 days in a row. Even the daunting perenieum. 6 months ago this would have been so strange but she was malliable like his daughter when she was a toddler. In fact he imagined it was San Diego back in 85 when Kelly was in diapers, same concerns, the irony was heavy. He could see that she had not been drinking very much of anything including beer or water in the last 3 or 4 days, really since they had successfully taken her up to golden gate park for a picnic, and he tugged her skin, and it didn't spring back very fast, and he looked into her eyes, and they looked a dull grey instead of the normal Santa Catalina Island blue. He thought, she is dehydrated, and asked her if he could take her to the ER, and she relented and said yes. He got on the cell phone and called the non emergency number, and asked them if they could send fire rescue to get his sick friend to University hospital, but he didn't want them to come lights and sirens, and risk lives by doing so. They came and took her to the hospital. Bobby quit drinking cold turkey then, that 4th of July. in the morning in front of brother Jeff's house as the moving van was being packed to the gills, someone offered him a cold beer. He declined and the smell of it made him nauseated. Later that day, having left the movers to be back in the ICU with Ardis, he took the elevator down to the gift shop. The floor felt like it was heaving under his feet. He got back on the elevator with Big Red in his clutches, BIG RED and as the elevator doors closed he had a thought. Shit! I caught up to her! How could I have caught up to her? He knew after that that his worst fear had come true. Ardis in the ICU JULY 2006 He had caught up to her. On the 4th of July 2006, I was completely inflamed with alcoholic hepatitis, superimposed over the chronic scarring. He had caught up to her, but not now, long ago. Those severe nosebleeds the November before Ardis had moved out, where he came home looking like someone who had been stabbed, covered with dried blood. He had started bleeding at a work thanksgiving dinner party, and struggled for over an hour to get his nose to stop bleeding. That was a sign he had missed until now, 6 months later, he was having bloody stools. Every day. Bobby went to see his doctor a week later, and told her that he had caught up to Ardis. It would be 5 months later, two ct scans, a hyda scan, two ultrasounds, one EDG and finally a laproscopic cholesystectomy with a liver biopsy before it went on paper. And the wild ride began.
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.