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