Chapter 15 Scans for the Ages

From RadiologyInfo.org for patients.

"PET/CTScans

Positron emission tomography with computed tomography (PET/CT) uses small amounts of radioactive materials called radiotracers, a special camera and a computer to help evaluate your organ and tissue functions. By identifying body changes at the cellular level, PET may detect the early onset of disease before it is evident on other imaging tests"

"MRI Scans

Magnetic resonance imaging (MRI) uses a large magnet and radio waves to look at organs and structures inside your body. Health care professionals use MRI scans to diagnose a variety of conditions, from torn ligaments to tumors. MRIs are very useful for examining the brain and spinal cord."

During the scan, you lie on a table that slides inside a tunnel-shaped machine. Doing the scan can take a long time, and you must stay still. The scan is painless. The MRI machine makes a lot of noise. The technician may offer you earplugs."

October should be renamed to Scantober as far as I'm concerned.  Between the last week of September and the first two weeks of October, I had an MRI on my spine, another on my pelvis, another on my sacrum and finally one on my brain.  Additionally, I had a PET/CT scan so that we would be sure we had the full picture before determining how to proceed.  I spent as much time lying on my back in a tube during this time as I did in my crib as a baby; or at least it seems that way!

The results were, well, pretty much miraculous.  All the tests came back with no signs of any living cancer cells anywhere.  I'll pause so ya'll can let that sink in.  Zero living cancer cells.  It doesn't mean I'm cured, as there currently is no such thing as a cure for my kind of cancer.  It just means the meds in my clinical trial have addressed the cancer exactly as the doctors had hoped when they were fighting so much with my insurance company to get me enrolled in that. I'm buying time and quality of life by participating in the Alecensa trial.  The drug has outperformed all expectations; they had hoped to slow the growth of the cancer but I don't think anyone anticipated a result as dynamic as this one.  

So, what does this mean?  Well, it means I can continue to live a relatively normal life.  I still tire very easily, which is a side effect of the meds,  and my back pain is very severe.  I walk with a cane, but at least I can walk.  Dr. W will see if she can do any additional cyberknife to alleviate that pain.  If so, wonderful; if not, still wonderful.  

We will do routine scans to monitor the beast that is hiding inside of me, and maintain the current dosage of the medicine as long as it remains effective. 

I guess I could chalk this up to the miraculous nature of clinical studies or the power of modern medicine.  I've been fighting the battle for nearly 13th months after initially being given a 6 months prognosis.  I'm not giving science all the credit for that.  I'm listing the human factor as the biggest contributor to my good fortune.  My support group has been amazing and includes too many people for me to list here.

I want to give a special shout out to Connie, who is my rock and pillar of support.  If it wasn't for her, I would have never been able to fight as hard as I have.

My family has been amazing as has hers.  I believe in the power of prayer now more than ever. My mom basically left her life in Ohio to come and help me get better.  

When I say my family, that especially includes the big family at InfoTech.  They are the best company in the world.

Old classmates and co-workers from ODOT have been following my blog and keeping in touch with their wishes and prayers.

I need to pay tribute to a good friend/family member who passed away unexpectedly on October 13; Robert Peter Lee (Robby).  Robby was a pillar in the community of the small town in Ohio where I grew up.  I can't help thinking that Robby might have pulled some strings with "the man" for me.

Thank you all for your support, prayers and well wishes.  I feel so blessed and extremely lucky to have such an extensive family to support me.  God bless you all.

RIP, Robby.

Chapter 14 Cyber Knife 

If it looks like the man in the picture is being tortured, well, basically he is.  The machine above is used in a procedure called Cyber Knife, which paraphrasing this very loosely is a method of pinpointing specific spots for radiation, thereby sparing the body any excess toxicity that is caused by whole area radiation (like whole brain, for example).

As you know I had whole brain radiation early in this journey, and it, along with the surgery that removed the large tumor in the middle of my head, was successful in reducing the lesions in my brain and spine.  A few months after, late in 2016 when we decided the current chemotherapy wasn't working, it was decided in addition to switching medications to perform cyber knife in order to clean up more of the small lesions in my brain.  I also asked if they could radiate my neck area, because it still had severe pain and as far as I knew that area had not been targeted before.

So, first a little bit about the machine itself.  If you've ever seen a car assembly line or maybe some other assembly line where they do computer targeted pinpoint welding, it's very likely they are using something similar to what is shown above.  Of course on a car the weld spots are always in the same place for a given model, so programming every time is not necessary (although I would assume they routinely calibrate the welding robots).  Cyber knife actually uses the same foundation and engine for the machine with just a few minor differences; and then of course this isn't really anything like welding!!

To do the job properly takes some arduous measuring, marking, recording, re-recording, etc.  All of this time I'm on the table where the machine is and there are 3 or 4 people around (including a physicist) making sure the mapping is done properly.  The mapping took 3 times as long as the actual sessions.  My head is immobilized by one of those masks I talked about earlier, only this one seems a little tighter.  This is the closest I ever came during a medical procedure to having a full blown panic attack, and this was only the mapping!! They prescribed me some happy pills to help me get through the actual sessions.

I think there were half a dozen or so cyber knife sessions.  After each session, they would release the mask and put a pillow under my neck so that my head was tilted back.  Like I could look into the tube and see the back wall, but I was lying on my back.  This position was extremely uncomfortable and I had to hold like that for what seemed like an eternity. While I was in this position, they did full dose radiation on the vertebrae in my neck (cervical spine).

Of the two procedures, the set up of the cyber knife machine was brutal; but result-wise, the full dose radiation to my cervical spine left me unable to swallow or talk because my uvula was badly burned (uvula is the hangy downy thingie in the back of your throat).  It was during the last week of 2016 and early 2017 where I lost the bulk of my weight mostly because I couldn't swallow anything.

Meanwhile, back on the chemo front, we switched to a medicine call Xalkori which seemed to work for a while, but eventually I had to switch off of that because of scan results not showing any improvements to my brain.  The doctors huddled and researched to come up with a clinical trial that would meet all of our needs; basically doing what Xalkori did but then having a larger impact on my central nervous system.

They located what they hoped would be the perfect immunotherapy study using a new drug called Alecensa.  Of course, my insurance company denied it because of cost ($23,000 a month), and recommended a different, closely related drug.  The doctor argued until he was blue in the face, but the end results is that I had to try the Xykada first.  Well, on the second day, Connie and mom thought I was having a stroke because I was talking all sorts of nonsense.  It was weird because I knew what I wanted to say but the words that came out of my mouth didn't match what was in my brain.  I tried texting, too, but what I saw on the screen was no where close to what I thought it was.  The next day, we called the clinic and the doctor reduced the dosage (this was a Friday).  On Monday, the clinic called and said "PRAISE THE LORD! Your insurance granted your participation in the trial."  My doctor had called the drug company rep and explained how I was the perfect candidate for this particular study.  He had a peer-to-peer with the drug company doctor, after which the drug company offered me co-pay assistance which made my insurance company concurrence automatic.  (It's all about the almighty dollar).  So now I am happily entrenched on Alecensa and hoping for good news with the next set of scans which take place during the month of October 2017.  I know I feel better and am hopeful that these scans will show that isn't a coincidence; I would like to see some real progress.

There's a lot of waiting involved in Cancer.  You can't go to the doctor and say "how am I doing?" because it isn't something a doctor can see in a patient's eyes or hear in their heart beat.  They can check for physical abnormalities but following cancer's progress involves lots of blood work, MRI's, CT scans, CT PET scans, radiology, etc.  All of these things have to be executed and reviewed by qualified medical folks.  So if anyone asks me how I'm doing, I guess I don't really know.  I feel better, I still have memory issues, I've got hearing loss in one ear, and my hair is now a wild blonde fro.  I get tired very easily.  My blood work has been good except for the white blood count which is perpetually low.  White blood cells are the cells that assist in warding off colds, flu, viruses, etc.  So I'm careful where I go and who I allow at the house.  My friends all respect that and don't come over if they have a cold, never bring their kids, etc.  I also go bed somewhere around 7 PM; sometimes even earlier; because I've shot my wad for the whole day in just a few active hours.  I'm being careful to keep moving every day so that my legs don't give up on me.  Some days I can walk to the end of the driveway and back, other days only to the garage door.

One last word on the worth of clinical trials; I've heard people who strongly disagree with clinical trials, viewing them as a pool of human guinea pigs each waiting to have some injection or infusion that might lead to the growth of a third arm or a nose in the back of your head,  The naysayers are vocal saying that the facts were not explained to them about the risks.  Well, I mean to tell you if you read all the documentation they give you on a trial, then you'll be as informed as you need to be.  Most people don't read it all; but I did and know exactly what "could" happen.

For this guinea pig, who doesn't stand a snow ball's chance in hell at survival using traditional chemotherapy/radiation options, I'm happy, actually proud to be part of a study that may one day lead to a long list of cancer survivors.  If I'm not in that group, then I am still happy that I had the opportunity to let my illness lend a hand in the fight for the cure.  If I am in that group, then that's great too.  Although I'm not terribly fond of the nose growing out of the back of my head.


Shout out to the Upper Sandusky High School Class of 1977.  Sorry I missed the 40th reunion.  Hopefully I'll be able to make the next one.