Wednesday, January 28, 2015

Me Moon

          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

Tuesday, January 20, 2015

Today-is the post radiation PET-CT scan

 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.

Friday, January 2, 2015

Graduation Day Celebration January 1, 2015

Graduation Day
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.


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

Thursday, January 1, 2015

Wednesday, November 19, 2014

One down, twenty four to go

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 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!!!!

Thursday, August 28, 2014

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

 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.







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

Monday, August 25, 2014

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

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.

Wednesday, August 13, 2014

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

 To obtain the necessary diagnostic information...



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


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.

 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

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


                                                 exploded view of skeleton