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

Friday, August 1, 2014

Acceptance is the key

                         PLEASE CLICK PICTURE TO ENLARGE

                      COLLAGE in main hall at the C.U. Cancer Center Anshutz outpattient pavillion

And acceptance is the answer to all my problems today. When I am disturbed, it is because I find some person, place, thing or situation -- some fact of my life -- unacceptable to me, and I can find no serenity until I accept that person, place, thing or situation as being exactly the way it is supposed to be at this moment.
Nothing, absolutely nothing happens in God's world by mistake.  Unless I accept life completely on life's terms, I cannot be happy. I need to concentrate not so much on what needs to be changed in the world as on what needs to be changed in me and in my attitudes. 

                   April 2006 Ardis on the liver transplant ward @ UCHSC

 For me, serenity began when I learned to distinguish between those things that I could change and those I could not. When I admitted that there were people, places, things, and situations over which I was totally powerless, those things began to lose their power over me. I learned that everyone has the right to make their own mistakes, and learn from them, without my interference, judgement, or assistance!

The key to my serenity is acceptance. But "acceptance" does not mean that I have to like it, condone it, or even ignore it. What it does mean is I am powerless to do anything about it... and I have to accept that fact.

Nor does it mean that I have to accept "unacceptable behavior." Today I have choices. I no longer have to accept abuse in any form. I can choose to walk away, even if it means stepping out into the unknown. I no longer have to fear "change" or the unknown. I can merely accept it as part of the journey.
I spent years trying to change things in my life over which I was powerless, but did not know it. I threatened, scolded, manipulated, coerced, pleaded, begged, pouted, bribed and generally tried everything I could to make the situation better -- only watch as things always got progressively worse.
I spent so much time trying to change the things I could not change, it never once occurred to me to simply accept them as they were.
Now when things in my life are not going the way I planned them, or downright bad things happen, I can remind myself that whatever is going on is not happening by accident. There's a reason for it and it is not always meant for me to know what that reason is.
That change in attitude has been the key to happiness for me. I know I am not the only who has found that serenity.

-Page 449 (first 3 editions, pg. 417 in the 4th edition) of Alcoholics Anonymous or The Big Book as it is widely known-

Wednesday, July 30, 2014

Turns out Lester was a baaad lesion. A PLASMACYTOMA

Turns out, Lester was a baaaad lesion. He was the result of an extremely rare malignant  plasma cell tumor called a Plasmacytoma.

It was a CANCER after all.

The phone call came around noon yesterday. It was the Highly talented and well known thoracic surgeon, and he had the report in his hand. Was this a good time? He encouraged Notbillybob to get a pen and paper and write down the words, even spelled them out for him. P-L-A-S-M-A-C-Y-T-O-M-A....


After reading about these words all day, Notbillybob finally sat down at his computer to post this on the Facebook group. There are way more questions now than answers. Multiple myloma is well known, being the second most prevalent form of   hematological malignancy in the U.S.

So, click the links. Read all about it. Remember, Notbillybob HAD a lytic lesion in his left seventh anterior (front) rib. Last Tuesday it was yanked out. He might still HAVE a multiple myloma present. "The rib tumor could be a MARKER of more disease..." said the Thoracic surgeon. Myloma usually has three major clues that it is present.
#1 Kidney failure. Well, we don't have that.
#2 high serum calcium reading. Well, we don't have that either. 
#3 Aplastic anemia. Well, no one has said for sure, but Notbillybob can read, and followed every morning blood draw while in the hospital. (They have a thing called "My Health Connection". There's even an Android app in the Play Store for it. Seriously!!) The problems plagueing him when he went in-namely low platelets, low hemoglobin, low hematocrit, low white blood cells, and low red blood cells...all point to aplastic anemia. Google search these readings all being low and the answer you get is an exquisite little inconvienince known as...
STINKFOOT! No, wait, that's a Frank Zappa song.  You get aplastic anemia. They are all low at the same time.

The Hematology and or  Oncology departments might call soon to make a follow up appointment.

Here is a short list of the recent ailments Notbillybob sought medical treatment for, which are directly related to this cancer.

Dequervain's syndrom of the wrist    - related

Dry eyes                  -related

headaches            -related


shortness of breath     -related

nausea                -related

Dizzyness causing falls     -related

Severe drop in platelets thought to be liver related-now believed to be related to plasmacytoma.

Petchae/purpura rash      -related

Who'd uh thunk, huh? Well, off they go back to the U this rainy morning. The chest tube dressing is draining, so they want to see him.

Sunday, July 27, 2014

Not the twilight zone, but rather... LIVERLAND


He gives one last high five  as he spins out of the room. Already his name is lost in the oblivion that is called LIVERLAND. He worked the night shift last night here at the "U".
Notbillybob and he jawed all night long abut the old days, and San Diego, a daughter born at Balboa Naval hospital, and small ships and "The good ol Navy" from the 32nd street Navy base to North Island Naval air station,  to last but definitely NOT least, THE Naval Training Center on Rosecrans, as seen in the Tom Cruise movie Top Gun. 
This nurse  had been stationed on board a 7th fleet fast frigate called the USS Meyercord FF 1058. 

He was an OS2, or operation specialist second class petty officer. Just like Phil. Ops. Operations. An Ops guy.

 Before the night shift came on, Notbillybob Choked back the sadness when things didn't go well during the Platelet/ Warfarin teeter totter that everyone took turns on yesterday. Bood is clotting too slow. Now too fast. Now to slow. OOPS, again too fast! Toot Toot understands all too well... this up and down ride. So does Ma.  Mas' is related to blood sugar.

Toots is related to INR. Clotting time. They wanted his clotting time to be plenty fast so that when they took out his chest tube, there would be minimal bleeding, if any.  When the platelets finally arrived, the nurse was bummed. They just weren't going in fast enough. They were burning daylight. Past noon now. The plan for going home was fading... into the amoniated haze of LIVERLAND.  

LIVERLAND is a place where computers  revert back to Windows 98 machines, where there is no cruise control, or frequent flyer miles. 

There are no cell phones in liverland. Mobiles, yes, but like the big ol brick from Miami Vice. Hold the pickles hold the lettuce will upset us, Hell no ,no,no,no
You cannot have it your way in LIVERLAND, 

and if you want to flirt with the girl two rows ahead of you in your Biology class, you're going to have to do it by passing a note just like the rest of us. 
Speech is slurred, keys get lost, I mean really lost. You might show up for a doctors appointment which was a real bitch to get in the first place. They put you on standby, and called you last week to tell you there was an opening, and did you want it. Only to be told now that you had missed by a day. Yesterday the doctor had clinic. Today he is in surgeries all day, I'm sorry. And no, we cannot do anything about the fee, sorry.

And if you want to go home lickity split from your super-major chest wall operation to remove a severely diseased, crushed from inside rib bone from the anterior left costal area under notbillybob's armpit, 

you gotta get there by taking the normal path, the unbeaten one. 
 The one where the labs are normal, or somewhat normal,
The one which doesn't go straight through the middle of this oozy, wierd slow lane.

He's Home, now. Yesterday, they opened his cage, and let him fly away. There are after care orders, and one stitch to remove in follow up clinic. Go figure, they ripped out a chicken leg size hunk from the chest wall, and just  glued it back together, placed some steri strips, and wa la!

 Be on your way young man. The biopsy report is pending. & to 10 days out. It was sent to Johns Hopkins pathology lab. Or so they hope. 

Click on the image for the cool Panorama effect