Chapter 18: Prayers, Poems and Pies

Prayers

Hello, all.  Sorry I have been a bit remiss in this month in communicating, but it turns out there may have been a good reason for that.  I have several topics to discuss now, but this one has priority over all, including the Christmas holiday.  A co-worker (and I have her permission to share this) named Barbara is on the same roller coaster ride with her husband George as I was on in August 2016.  He has recently been diagnosed with a very aggressive cancer.  Summing up the state of things, Barbara wrote that they had a very positive experience at Florida Cancer Center, and that they were very proactive in their pursuit of the disease.  He is currently scheduled for surgery on Tuesday the 26th following a diagnosis on the 22nd.  They got an appointment the same day they called on the 22nd, which is amazing in and of itself.  They wanted to have a PET scan but given an OR was available Tuesday and they would be operating regardless of the results, they will do the PET scan after the surgery.  The scan will show if there is any matastasis.   I won't say more than that as it seems a bit personal even though she told me I could share.  The main point of sharing is so that all of you, as you are praying for all of your family and friends this holiday season and beyond, please include George Simons in your prayers.  I can attest to the power of prayer based on my own results.  I'm almost at the 1.25 year anniversary after an initial poor prognosis.  Pray for George, Barbara, the doctors, the surgeon, the facility,  etc.

Actually, while you're at it, if you could continue to mention my name in your prayers, I've had kind of a rough month suffering some extreme vertigo.  My cane isn't really sufficient to keep me stable anymore so I'm looking at walkers.  I hate to take that step because I'm afraid I won't come back from it, but it also seems prudent given if I fall my bones are terribly weak from the bone cancer and I am a big risk for broken bones/displaced parts.  Some think I should get a motorized scooter, but if I do that I know I won't get ANY exercise in my legs and they will atrophy.

A Poem for InfoTech

'Twas the night before Christmas and all through "The Pointe"

No people were found in the InfoTech joint!

The building was locked up as tight as a drum

So peeps could stay home and wait for Santa to come.

The parties were clearly defined by the leads

With requirements defined by the development teams.

The services team was asked how they felt.

Some said "let's do First Mag" for a belt.

Consulting was asked if they would opine

They replied "Yes, but we'll need more time"

Agreement was finally reached by all

Next year we'll start early in the fall!

Lessons behind us, the future looks cool.

Next year I'm winning that football pool.

Jeff Bakes a Pie

What's your definition of eccentric?  Would it be accurate to say that baking pies in a hotel room with a kitchenette because someone asked you to, would that be considered eccentric?  Or is that just plain crazy?  Well, it's neither.  It's typical behavior of my friend Jeff Hisem from Ohio.  We worked together at ODOT for 23 years. He was my boss, but more my friend than a manager.

Jeff was down here in Gainesville at Info Tech for the Decision Support Summit at the beginning of December, 2017 along with about 50 other folks from various transportation agencies across the country and Canada.  Their flight arrived on Sunday late afternoon, and his traveling companions with whom he was sharing a rental car dropped him at our house.  Janet and Justin made a point of saying hello to me before dropping him off, which I really appreciate.  Very caring people, for sure.  There was another ODOTer here for the summit  (Tim) but he had other transportation.  I had not been feeling all that great that weekend and so it was a pretty short visit, but it was wonderful to be able to sit in the sun, have a beer and talk to Jeff.  Actually, listen to him would be more accurate (tee hee).

Monday was the summit opening, and I really wanted to go but I had a doctor appointment and wasn't feeling at all well.  So I didn't make it in that day.  Probably best I didn't because I understand it was sardine city in that area!  Shout out to Shanna for being able to orchestrate breaks, lunches, etc.  She's a wonder, for sure.  A lot of people put maximum effort into making this event a success, and from what I've heard it was for sure.

On Tuesday, I went in to the building to see some of the people that I've known for years from DOTs and AASHTO.  So many good friends and all available at the same time. It happened that I arrived as they were in the middle of the break and I was able to talk to a bunch of people.  When the summit resumed, Jeff led me in to the first room and I sat in a chair along the wall for about 5 minutes.  It was crowded in the room, so I excused myself and Jeff escorted me out.  We went into the other room, and I had what I can only describe as a panic attack being at the front of the room with so many people.   I didn't realize until that day how much my confidence has been affected by my disease.  Before I was sick, I was noted for giving good presentations,  leading meetings, mentoring and managing people.  Now I was a bowl of jello, shaking and nervous because of the crowd.  Jeff saw I was in distress, took me by the arm and led me from the room.  I texted Connie and she came to pick me up at the front door.  That was the weirdest thing that has happened to me in terms of psychological impacts of my illness.  I guess I'm going to have to work at getting my self confidence back.  I know I can do my job, but I'm happy to not be closely involved with the clients right now.  I'm hoping eventually to get back to that, but it seems a long way off.  This is by far the slowest healing process I've ever had to endure!!

 So, I've gotten off track. This is supposed to be about pies.  Evidently, at the first part of the summit, someone questioned Jeff's ability to bake pies.  Given they were staying at a hotel that had a full kitchenette, he picked up the gauntlet.

All he asked from me is to borrow a few items.  Pie plate, french roller, pastry cutter, measuring cups, measuring spoons, spatula, bowls, salt, cinnamon, aluminium foil; he bought the rest of what he needed and made the pies in his kitchenette at the Marriott Residence Inn.  Monelle also supplied him with a pie plate (Maybe other things but I'm not aware).

One of the pies he made was egg free, because Janet (from Ohio) has so many food allergies and one of them is eggs.  He saved two pieces for Connie and me, and I'll tell you what; I don't know if I've ever had a better egg free pie (or if I've ever even had an egg free pie)!

It was delicious.  He came by, picked up the stuff.  I was in my jammies but still came out to talk to him.  He was very apologetic, but I was like "Jeff, you're just being you and I love that."

So, the pies were a huge success.  He returned the items on Wednesday evening; same deal I was not well and in bed most of the day but got up to see him.  He is one of the best friends I have ever had, and I would have been devastated if I hadn't been able to see him.  It was a precious memory being made with the pies, etc.  Oh, not to mention the home made peanut brittle and caramels he brought us.  Yowza!

Happy Holidays, everyone.  I hope you have a wonderful season with your families.

Chapter 17: Anna One, Anna Two, Anna three

 Anna One, Anna Two, Anna Three

If you don't understand the above picture, congratulations.  You're young.  If you do understand, then you also know about things like warming up the television, changing directions on the antenna from north to south (or points in between) so that you could get a completely different set of channels. And mind you, a "set" of channels might be as many as two!  There were lots more options on the AM radio.  I used to listen to CKLW out of Detroit.  They played music that my mom hated, like the Stones, Beatles, Eric Carmen and the Raspberries; "hard rock" stuff like that!  

Anyway, let's get back on track.  Anna one - my first cyberknife to try to rectify my lingering and excruciating back pain.  There were originally 3 treatments scheduled, starting on Wednesday, November 8.  A last minute conflict arose and they rescheduled to Thursday the 9th.  This was the longest of the appointments with my time "on the table" reaching close to an hour and my actual scan minutes were somewhere under 50. An interminable amount of time when you can't move, scratch your nose, itch your whatever, stuff you do all the time.  My hands were "hobbled" so that I would have to keep them to my side.  Good that I take anxiety meds!  After the treatment was over, I felt fine with no lingering affects.  I went home and rested the rest of the day.

Anna two - Cyberknife treatment #2 occurred on Friday, November 10.  Pretty much a carbon copy of the Thursday treatment only this time I came out with a really sore neck.  The first day they gave me an extra rolled up towel to help cushion my head.  I didn't realize how much that helped until this treatment was over.  The back of my neck around the base of my skull had been lying directly on the hard plastic which ended up bruising me.  I was okay after resting again for the rest of the day.  Cyberknife, if I know nothing else about it, I can attest to the fact that it really contributes to already heavy fatigue.  My meds also make me very tired.  I'm not taking daily naps anymore, but do feel the need to lie down and rest my back a couple of times a day.

Anna three - The third and  final treatment occurred on Monday, November 13.  I remembered to ask for a cushion or pillow and they brought me a nice piece of foam on which to rest the back of my head.  All turned out well, with no repeat of the neck pain from the second treatment.  It is too soon to tell if the cyberknife treatments will impact my chronic back pain.  The doctor said it can take 2-4 weeks before the full value of the treatments are realized.  If there's no relief, then I have another alternative to explore which I will write about when the time comes (if it comes).  I don't want to jinx my treatment by discussing "what if" scenarios!

Chapter 16: Twas the Night Before....

Twas the night before CyberKnife

And all through my brain

I kept thinking to  myself

"Hope that's not another train."

I hope you all are ready to continue reading, because I have a need to write!

Early last week, I had yet another CT scan; this one specific to my upcoming cyberknife treatments.  The radiology oncologist, Dr. W, said that this particular machine can take tighter slices and makes it easier to pinpoint the areas in need of treatment.   She asked me to not take my pain pill before I came in for that scan; that's a tough order for me because I pretty much am non-ambulatory until I get some pain meds in me for the day.  But I did it because I want to get the most out of this process as is possible.

When I got in the room with the CT machine, they helped me get up on the table, and then she started poking me in the back telling me to let her know when she "hit the spot" where the pain was the worst.  Well, you may have heard me holler wherever you are when she hit it.  She then preceded to mark up my back with little sticky arrows to make sure she could see the area in the CT results, before finally loading me into "the tube" and taking the scan.  I was crying by the time I left there.  I had a pain pill in my pocket and took it as soon as I was out of the room (with her blessing).  

I've tried to go without pain meds a few times, but it's ludicrous.  I'm not addicted to them, but i definitely rely on the relief I get from them.  I'm keenly aware of the big opioid problem in our country, and sometimes have to justify my use of them to friends and family.  The doctors both explain it like this:  If you have pain in your body, then your nerves will send out pain receptors.  If you have the pain receptors present in your body, that's where the drugs focus their attention.  It is when you take the drugs and you don't have those pain receptors active in your body, then the drug focuses on your pleasure receptors.  That's what causes the addiction.  Sometimes I am overly careful about not taking the meds because I fear all the bad press and have had fear of addiction, but my doctors and main support team stress to me that it is important to stay ahead of the pain.  If I wait until I'm fully engulfed in pain, then I have to spend a couple of days in bed.  If I take a pill once a day or once every 2 days, or 2 a day or whatever I need, my life is much more comfortable.  And yes, I've tried non-opioid pain meds but I end up taking 3 times as many and don't get the same relief.  

My immuno and anti-seizure meds tend to make me very tired.  I've been trying to walk more and more each day (cane assisted) and have gone out with the family to shop and whatever, frequently sitting in the car while mom and Connie go in.  I just need to get out of the house.  I'm also no longer in need of a daily nap (although one might argue that my bedtime is actually most people's nap time).  I'm a big sleeper now, and relish going to bed at a painfully early hour.

The hope is, when my cyberknife treatments are done and it has a chance to work (which sometimes can take a week or two before the full benefit is realized), then I'll be able to come back to work.   I don't anticipate being able to work full days sitting at a desk

Note: Treatment scheduled shifted by one day.  Starting tomorrow (Thursday November 9) instead of Wednesday, the 10th).  Just means I'll have to carry the sessions into next week to complete the full course  of 3-5 treatments.

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.