Chapter 20: Circling Sharks

Just when I thought it was safe to go back in the water...

Hello, everyone.  I know it has been a couple of months since I had a fresh post, and I apologize for that.  I've been terribly busy at work and home.  When I spend the majority of the day working on the computer, about the last thing I feel like doing is blogging!  But here we are.

First on the agenda, a tribute to George.  George lost his battle with cancer just a few weeks ago.  His wife, Barbara was a rock for him, and she continues to be a person I idolize.  George was a great man, and I can't match the tributes that have already been written for him.  So I just ask that you all pray for his soul and toss in a prayer for his family.  I know they all miss him terribly.

Second up, it is time for my quarterly insurance rant (which I could do weekly).  At the beginning of 2018, my insurance from my ODOT retirement had a subtle change.  The network for outside the SuperMed PPO service area changed.  I was notified by a letter that I would need to find a new radiation oncologist and a general practitioner.  I knew this was coming so I made a doctor appointment with my GP for the last week of December.  She said she'd be happy to refer me to somewhere with a doctor on my plan.  I haven't had the need yet for a GP but I will call her office when I do for a recommendation/referral and to have my records transferred.  She's been my doctor since I moved to Gainesville in 2009.

The worst part about the insurance change was the elimination of my radiation oncologist.  Dr. W and Dr. P (clinical oncologist) were both responsible for saving my life in my opinion.  So of course I was very dismayed when I learned she would no longer be able to treat me.  I filed the forms for "continuation of coverage" which would allow me to continue under her care.  The clause is there specifically for people in my situation who are under the care of a doctor for a continuing illness.  I filled out the papers, sent them in, and a week later got a denial with a list of approved providers in the area.  I was crushed.

Besides losing her, I had a brain MRI scheduled at a facility by North Florida Regional Medical Center where I always have gone for my MRIs. When I showed up the first week of January, they informed me that the facility was no longer covered under my new and improved insurance.   I didn't want to schedule elsewhere so I asked how much it would cost if I didn't use insurance to pay.  I was astounded when they said $400, and I paid it out of my pocket so as not to have to deal with finding a new place and getting the scan in the time frame for which the doctors had ordered it.  It was on this scan that the "dead zone" showed up in the back of my brain.  The immunotherapy drugs had successfully worked on all the small metastatic tumors (mets) on my brain, but the view on the back of my brain had an odd area that they could not tell what it was.  One hypothesis was that the area was dead tissue, and we decided to wait for 3 months and then have another MRI to make sure there was no growth of the dead zone.

Third: Flash forward a few months to April, and time for the MRI to check the growth or lack thereof in the dead zone, also looking for any return of the mets.  (Now I know it is baseball season, but I'm an Indians fan so not discussing the Mets here).  Dr. P referred me to Shands UF hospital, which had 3 different choices of locations for my MRI, and they were listed as a provider by my insurance company.  I scheduled the MRI for the Orthopedic center building, which also houses radiology.  I started the scheduling process about April 10, 2018.  The soonest they had was April 27 and the times available were limited to either 6:30 AM or 8:30 PM.  I took the 6:30 AM.  A few days later they called to get some additional information from me prior to the scan, and informed me that my co-pay was going to be almost $600, which they said was 25% of the total cost.  I hung up and called Invision to verify the cost, and to go there out of my pocket was still $400.  So I canceled UF and had the doctor fax the order to the Invision facility instead.

Yesterday, the 25th of April, Invision called me at 8:30 in the morning and said they had a cancellation for 10:30 and did I want to take that time slot.  I said abso-frigging -lutely.  I went later that morning and got prepped for the MRI.  For brain MRI's they have you wear what looks like a hockey mask before they insert you into the tube.  It takes about 20 minutes for the initial pictures, then they pull you out and inject contrast into  your arm.  My veins have taken a beating throughout my treatments, so the tech took several stabs at it (tee hee), before hitting the vein.  In went the contrast dye which he said was like the consistency of syrup.  It stung like crazy!  Back in the tube for another 6 minutes.  I'm not normally claustrophobic but being in that tube this time just about put me over the edge.

We were out to dinner when I got the call from the Doctor the same day as I had the scan.  That's always a bad sign when they call you that quickly with the results.  The dead zone had grown 2 mm since the previous scan in January, which means the dead zone isn't dead at all.  It's live cancer.  I stepped out of the restaurant to talk to the doctor and she outlined 3 options: 1. Keep monitoring the growth by scanning every 3 months.  Not a good solution just watching something grow.  2.  Gamma knife - a treatment similar to cyberknife in that it can target small, pinpoint areas and apply as needed to those places.  No guarantee that this would work or that they could get it all.  3.  Surgery.  The doctors will consult with the same surgeon who removed my brain tumor in August of 2016 and see if that is an option.  If it is, I will have the surgery in the hopes that the zone can be completely eradicated.

That's all I have for this post.  I will have another post, hopefully in the near future, that elaborates on what path we chose and the expected prognosis.

Chapter 19: Hi Ho! Hi Ho! It's Back to Work I Go!

I went back to work recently, on an "as I can" basis.  This past week, I managed to work 4 consecutive days, although the most hours I could work in a day was six.

I have a new job at Info Tech and so I was thinking of the seven dwarfs and which of these dwarfs best describes my demeanor in my new settings.  I was going to try to find a free image of one of the dwarfs; but Disney is crafty and protective of its intellectual property.  I could have snipped one, but given I work for an ethical software company, didn't seem appropriate!  If I could have posted an image, it would have been all seven of them in their go back to work mode.  I figure there's a little bit of me in each of these dwarfs.

• Bashful - the most timid of the dwarfs.  Timid like I was the first day I went back into the office.  Nervous as a cat and only stayed a couple of hours.  Then I came home and couldn't sleep that night worrying about the next day!

• Doc - I think I have some doc in me.  I mean I know basic common sense about working and physicality; what not to eat, what I should eat.  For instance, on weekends, I do a shot of bourbon in my coffee in the mornings.  I don't do that with my work coffee!

• Grumpy - When I get up in the morning, yea, I'm a little grumpy.  Especially on work days when I know I can't have bourbon in my coffee,

• Happy - Happy probably is the most like me today.  I'm pretty much happy about everything in my life.  I have some friends going through rough times, but I'm happy in knowing people are praying for them and willing to do anything to help them.  I love my job, my family, my extended family; I don't think there's anybody I don't love (unless we want to talk politics, which I swore I wouldn't do in this blog).

• Sneezy - Cat allergies, dust allergies, pollen, mold, etc., etc.  I sneeze a lot.  In the current flu season, if I hear someone else sneeze, I turn and go the other way!

• Sleepy - I identify the most with Sleepy; because I feel sleepy after 6 or so hours in the office and usually come home, feed the dogs, eat, put on PJs and lay down in the bed to watch television. Typically I'm asleep before nine.

• Dopey - This dwarf describes how I feel currently in my new job in comparison with my co-workers.  Some of them are seasoned economists, bright young economists, statisticians, data analysts, and a great support team.  Everyone works hard together.  I'm climbing the learning curve but it's a BIG curve! 

 Not many people know my collegiate history; I think most of my friends in Florida assume I graduated from The Ohio State University, since I'm such an ardent and vocal fan.  Not true.  I went to Ohio State in the fall of 1977.  I had been the first chair trumpet player at my high school for three years running, so I auditioned for the OSU School of Music and was accepted.  I've always been passionate about music.  Similar to what I'm feeling now at work, I went from being a big fish in a little pond to being a guppy in the ocean; so many talented musicians!  Additionally, I had aspirations of trying out for The Best Damn Band in the Land, but a basketball injury caused me to need knee surgery right after high school graduation, so I wasn't able to try out that first year.  I was intimidated in any class where I had to do solos or sight singing; so I changed my major after the first quarter to an "undecided" path. I learned a lot of important things during quarter 2 and 3, mostly about partying, and barely passed.  I returned for the fall quarter in 1978 and then dropped out.  I had worked for ODOT during the summer of 78 as an intern, so I leveraged that and applied for a job in the central office.  They hired me in June of 1979.  Twenty seven years later, I earned a BA from Franklin University, and 18 months after that, an MBA from the same university.  I maintained a 4.0 GPA throughout undergrad and grad school.

I don't know why I told that story; it just seemed appropriate with the apprehension I was feeling about my new job.  Thankfully, I'm not the same person I was in 1977.  I have confidence in myself now, and plan on succeeding this time.  I don't quit anymore; which is probably obvious by this battle I've been waging against cancer.

As for my current condition, I had a PET/CT scan in January.  Results showed little change since the last scan, which is a good thing because in the previous scan there were no living cancer cells found in my body.  I then had a brain MRI the first week of February.  Those results were not as favorable, with the doctor seeing a spot in my right cerebellum which has grown since the last image. She says we will keep a close eye on it, scanning monthly if necessary and determining if any radiation is needed.  I can't have any more full radiation on my brain, as I've already had a near toxic amount.  But I can have cyber knife if necessary.

I'm asking for prayers not just for me, but for anyone suffering pain in their lives, including George and Barbara.  I work with Barbara and her husband is struggling with cancer right now.  Please pray for them.  Also, my good friend Becky in Ohio is recovering from breast cancer surgery.  Please pray for her as well.

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.