Chapter 25: All About Brutus

Brutus Comes Home

This is Brutus.  He was born October 30, 2004 in a trailer outside of Cambridge, Ohio.  We had read about him and his siblings in The Columbus Dispatch and were in the market for a puppy.  Brutus seemed to fill the bill.  Since we were headed to the Akron/Canton area for a housewarming party that day, we stopped to look at the "8 week old" advertised CKC Shih-Tzu's.

We should have done the math instead of taking the breeder at face value.  We were told Brutus was eight weeks old; his small stature was attributed to the size of his parents.. We asked to see them and were told "well, his dad doesn't live here."  We never did see the mom.  It's really a shame; Brutus would have benefited from the additional 3 weeks of mommy-time so she could have taught him about the finer aspects of social graces.  As it was, he was the epitome of trailer trash.

We pulled up to the trailer and were just a might scared at the size of the wood piled up by the house.  The amount of smoke coming from the trailer was astounding and we thought the whole place was ablaze.

 Had we realized Brutus was only five weeks old we might have walked away.  As it was, the little black bundle of fur was already entwined in our heart strings, so against every muscle in our combined bodies we took the little beast out of his 65 foot by 12 foot existence.

 The picture above represents that day. This occurred in early December of 2004.   This was the year of the big ice storm in Ohio.  We were without power for the better part of the week.  One of the highlights of the week was Connie starting Brutus down the potty-training road. Connie caught him in mid-squat, scooped him up and out the back door. The problem was the back steps had about an inch and a half of ice on them.  Brutus was flying through the air while Connie was lying on the back step.  I was on my way home from work when Connie called me on her cell phone with the bad news, and I scurried as much as I could given the icy road conditions to get her to a hospital.  She required stitches in her arm.  Many folks swear to this day that we went to the hospital to enjoy the warmth.  I'm not going to say we didn't enjoy it while we were there, but I'd ask you to look at the scar on her arm for proof of her injury.

I retired from ODOT at the beginning of 2009, and took a job with Info Tech starting in June of 2009.  It was the summer before Brutus's 5th birthday.  I was living in Gainesville in a hotel for 2 out of four weeks a month.  Brutus had a vet appointment, because he was not able to digest his food properly.  It was then we started him on the half-of-a-pepcid a day routine that he would have to adhere to for the rest of his life.  

Brutus was always in charge of his own life.  He took the pepcid faithfully, ate his food as if he had never eaten before, and growled at his brothers if they looked at him while he was eating.  He loved chasing squirrels in the back yard, occasionally treeing one and spending the entire day in the yard beneath the tree of the day.

Connie was holding him on a beautiful Fall day in 2009 and he almost passed.  It was right around the time of his birthday.  He had been on meds including kepra for seizures during this time.  When he began to fade away, mom and Connie took him to Med Vet in north Columbus.  This was the only place that wanted anything to do with him.    He was diagnosed with a liver shunt; a strange disease that basically builds an artificial pathway around the liver.  All the blood that normally passed through his liver was basically dumped directly into his system, bypassing the filtration that the liver provides.  It also results in a smaller than normal liver.  

He was deemed "not likely" to survive the surgery; but we had faith in him and in Doggie Howser who was the physician at Med Vet who performed his surgery. ( Doggie's real name is Dr. Kennedy).

I flew home to Reynoldsburg in time for Brutus' surgery.  Dr. Kennedy was amazed at the size of the shunt, and felt like he needed to draw us a picture on the white board.  He stated again that Brutus may last a year, but not to expect even that from him.  His surgery was hard on him and recovery was even more difficult.  Little did the doctor know that Brutus was worth 9 more years!

Brutus at Easter 2018

All told we were out $6,800, five of that directly attributable to his liver problems.  We both agree it was money well spent.

We lost Brutus last month, just a few months shy of his 14th birthday.  He is in the china cabinet now with Billy and Chance who preceded him in death by several years.  We always thought that Brutus missed his bro' Chance but not so much Billy!  We tried to replace the boys with two Shima brothers from Fort McCoy, but that was ludicrous.  How can you possibly replace your first born?

Here is a more recent picture of Brutus.  Rest in Peace, Buddy.  Sorry it has to end this wayl

Chapter 24: Halo of Shame

Halo of Shame

I had a follow-up appointment with Dr. Sherr, my neurosurgeon, who recommended CyberKnife for the entire area encompassing the back of my head.  Since the beginning of 2018, my insurance wouldn't pay for the Cyber-Knife.  So, I scheduled an appointment with Shands for their parallel treatment called gamma-knife.  The first appointment went smoothly because we were meeting with the doctors and discussing options.  When I say "doctors", I mean students and everyone.  The room was so crowded you could barely move!  My radiation oncologist was Dr. Foote and ironically he was wearing a  cast on his lower left leg and taking a knee scooter between appointments.

The first MRI was painless and occurred that afternoon.  In and out, no contrast, barium or anything like that.  The purpose of this MRI was mapping so they could tell where into my skull they needed to drill the four holes that would secure my halo.

There were four of us scheduled for the same day and we all had to arrive at 6:00 AM. Parking couldn't have been more of a nightmare.  The valet was not open yet.  We were told we could use the parking lot (the procedure was across the street from where we met with the doctors) and everywhere we turned we were met by barricaded entrances.  We were almost late as Connie had to wheel me to the elevator, down to the first level, across the street, up a ramp, in the side door, down another elevator and then a very long corridor past maintenance, catering, cleaning, dining and all sorts of mechanical functions until we saw a sign for "Oncology".

The idea was to corral all of us into a single location to which escape was not possible.  Four of us were there for halos, most with a companion. They prioritized by simplest to most complicated.  I was last (go figure) and had to sit around all day waiting on the other three.

For my halo, they first numbed the four areas of my scalp and proceeded with the drilling using a DeWalt power drill  (I'm not completely sure about the brand).  Once they had those holes drilled, they attached the halo with four plastic screws.  It was removed later in the day and boy, did I have a headache. When I went into the MRI tube, I really couldn't move.  It took several treatments on the rubberized "dead zone" to get the margins and such just to where the doctor had requested.

My oncologist indicated that there are a couple of different options in the clinical trial phase which just now became available.  If by chance the immunotherapy drug that I'm using fails in the future, there are new options becoming available every day.  I'll have an MRI in a couple of months where that decision will be made.  The new immunotherapy drug that has been released is a great way to breach the wall to the brain.  Film at 11 for more on that.

The good news is that while I was getting my head drilled, Connie went to the hospital cafe armed with a voucher for $1.70.  She said "they should have given that food away."

Next up: My Battle for Outpatient Physical Therapy

Chapter 23: My Days (Weeks) at Palm Garden

I had a few stipulations for being released for rehabilitation.  First off, the facility needed to be approved by my insurance. By now you realize how difficult that task can be!  There I was in North Florida Regional hospital; denied release and denied admittance to the rehab facility of their choice.  They said if I left "on my own" I could be responsible for the length of the hospital stay plus any surgeries or procedural costs I had incurred.  It was like being held hostage by my own insurance company.

A condition or two also were in place before Palm Garden would accept me.  First, I needed to urinate;. Second condition, I needed to have a bowel movement.  Now, I'm good but I can't "perform on command" so to speak.  They tried everything to get me to poo, but alas all attempts failed.  I begged them to get me up and out of bed, as I knew that was all it would take.  The nurses all concurred among themselves that I  needed an enema.  They never spoke to a doctor, just chose themselves to "induce" me.  My God, talk about a broken floodgate! When the doctor finally found out, he was NOT happy. He said that treatment was for extreme cases, of which I didn't fit the criteria.

Soon after, an ambulance arrived to transport me around the corner to my rehab facility.  This was a full 2 days after I was ready to be released from the hospital.  The two boy "certified nurse assistants" were ill equipped to deal with the aftermath of an enema.  I never saw those two again so I'm thinking I helped them choose a new career.

The next day, a new CNA arrived. I was clearly marked as a dual assist but the girl said "I got this."  Well, guess what?  She didn't and down on the floor I went.  My arm was twisted up under my body, my leg was all whopper jawed.  An ambulance was called to transport me back to North Florida ER where I had numerous CT scans and x-rays.  Seeing as how nothing was broken (my wrist was only sprained) I was transported back to Palm Garden where I scared away the first CNA by saying "please don't drop me; I've already been dropped today."   She ran off to the nurse's station and sent another couple of CNA's down to assist with getting me to bed.

Besides the care at the rehab center being sub par, the food was God awful.  A "grilled cheese" consisted of a piece of an un-toasted, un-grilled slice of white bread with cheese sauce like you see at a ball park drizzled over the top.  I made numerous calls to Connie saying "Bring me something to eat"!  I was in there for two and a half weeks; I would still be there if they had been able to convince my doctor that I hadn't reached the point of diminishing return with my therapy.  The therapy here was good; it just wasn't frequent enough.  I spent at least 4 idle days in a row in bed with NO therapy as a result of the fourth of July holiday.  I tried to find an in-home therapy deal but my insurance blocked all seven of those potential agencies.  My only choice now is out-patient physical therapy, for which I received a list of pre-approved individuals.  I will probably fight through that list after I see my doctor and ask his opinion.

Luckily, I was allowed to check myself out of rehab, due to the doctor's statement about the "point of diminishing returns".  They begged me to stay, even offered me a full weekend of nothing but therapy.  It was too little too late as far as I was concerned.  So Connie packed me up and off we went.  I had a hell of a time getting into the car, and am just able within the last 2 weeks to hold my head up on my own.  Of course I fell down on the first day home, which thanks to ingenuity by Connie and Mom I was able to recover.  The doctor says I will probably spend a full 6 months in the wheelchair.

Next Up: Halo of Shame

Chapter 22: Careful What You Wish For

Careful what you wish for;  

The light at the end of the tunnel may be another train. The ER is a dismal place.  People without insurance, people with no doctor to care for them, people talking about urination, old people, young people, people from all walks of life, including crazy people; you can find them all in the ER.

It didn't take a brick to fall on my head; I knew for sometime that my cheese was sliding off of my cracker.  I had no idea about the reason, though.  I just knew I didn't have "it" anymore.    I can't really define "it" other than to say if you have "it", you know "it"; and I knew I didn't have "it" anymore.

An ER visit was warranted if I didn't want to wait on insurance approval.  I knew the approval process could be weeks long, and so we made sparse plans for an ER visit on the advice of my neurosurgeon.  

I had a very bad headache on Thursday, May 17 so we proceeded to North Florida Emergency Room.  The waiting room was at capacity. One person's very loud cell phone conversation consisted of wishing that he could urinate; but if not he was in hopes that they could probably get a urine sample from his diaper, otherwise they would have to catheterize him.

Sitting directly across from us were two young ladies who were obviously sisters and looked enough alike to be twins.  One was very ill and in pain.  Her sister did everything in her power to comfort her, including getting her a big fluffy pillow, a warm blanket and rubbing/massaging her head.  Connie struck up a conversation with one of the girls, and before you could blink an eye, we had their life story. They were from a family of 7 girls who always had been mistaken for septuplets. The ill sister (suffering from uterine cancer) was the eldest of their family.  They had driven 90 minutes from a small town north of Gainesville. This very ill young lady had previously been told she had a very short time to live.  I told her to dismiss those statements as Doctor's are not God and have no clue what His plans are for you in this life.  The younger sister jumped to her feet, came to my side and asked if she could pray over me.  I said "why certainly".  I then shared my cancer history with the young ladies and told them the doctor's set my deadline for 18 months ago.  Both girls were elated at that good news and smiled from ear to ear.  They seemed to momentarily forget their troubles.  I often think of those sister's and hope things are going well.

Another gentleman was bragging about the source of his tattoos (he inked them all himself) and he and his sister were both saving their money for a tattoo sleeve (these cost thousands of dollars).

After three hours they took me to a bed in the ER holding area.  There was a woman in the next "room" (separated by curtains) whom you would think the nurses were murdering.  She was very hard of hearing and clearly didn't understand the medical personnel's instructions.  They were trying to put a tube through her nostril and feed it into her stomach to drain the contents.  She kept screaming "stop doing that".  The nurses eventually got the job done, only to have her yank the tubes out. It was agony just listening to her.  I kept hoping they would write some instructions for her, because it was clear she could not hear much.

Once I was admitted they wheeled me back to the ER holding area.  This is the place where one goes to await a permanent lodging assignment.  A nurse came in with a bevy of questions about my current medication.  All of which they had they had in stock in their pharmacy with the exception of Alecensa.  Alescensa is a cancer clinical trial drug with which I've been particpating.  They were unable to supply those, and so they asked Connie to return home and deliver her stock to them for inventory purposes.  She did not return them all, thank goodness, because guess what?  They lost them.  At $500 per pill, that's a size able loss.  The investigation continues.

Things started rolling bright and early the next day.  I had not been in my room for more than 4 hours before they took me away for an MRI.  I was told no food or drink, because the neurosurgeon was determined to have me in surgery by 10 AM.  About 9 AM, they came and took me off to surgery pre-op.  I was told that the surgery on my brain would last approximately 3 hours.  According to Connie (I was not conscious at the time), the first craniotomy took 7 hours.  Connie was informed that the earlier radiation treatments had caused the tumors to rubberize, making the surgery very difficult.  The neurosurgeon said the surgery was one of the most grueling of his career. He was in hopes that he removed all the cancer but a followup CT scan would tell the whole story.

A CT scan was ordered and performed the following morning.  The neurosurgeon met with Connie at 10 pm on the night of the 19th and told her there was cancer remaining in the brain.  He begged her to let him finish his job and get it all out.  He was sure that I was strong enough to make it through the surgery.  It was no easy decision for Connie but she knew without having the surgery my chances of beating the odds against cancer would diminish.   If there is one thing I regret it is putting Connie into the position of having to make the decision. After much discussion, none of which I remember, the second craniotomy was scheduled for the 22nd to allow the neurosurgeon to finish his work.  This surgery was apparently simpler, in that it only took 6 hours. Connie spent the next three weeks at my side day and night.  Mom took care of things at home and that included spoiling three dogs. Don't know what we would have done without my mom holding up the home fires.

My stay in the hospital was very long, much longer than the two days I was led to believe it would be at the start of the ordeal.  I couldn't go home as I was in tremendous pain.  I was unable to do anything on my own, including getting out of bed without assistance.

Next up: The rehab center.

Chapter 21: Eddie Takes a Wife

Eddie and Megan

March 10, 2018

Rockin' like a Wagon Wheel

Hello, everyone.  I purposefully omitted this portion of my blog from my previous post, because I didn't want to overshadow this momentous event with my own sorrowful life tales.  This gig was a happy gig, and this page is totally dedicated to Eddie and Megan's wedding and the jam that followed.

The first time I saw Eddie, he was about a year old.  Connie was driving, and it was about 30 degrees outside.  We came around the corner and right smack dab in the middle of the road was a toddler.  He was wearing men's cowboy boots (up to his thighs), a diaper, a pair of glasses and nothing else.  I said "My God, Connie, there's a naked child in the road!"  And she said "Oh. That's just Eddie.  I'll tell Colleen when we go inside." She scooped him up, went inside and  Connie told her sister that her youngest had been in the middle of the street half naked.  She yelled out to Nate "NATE.  You're supposed to be watching him".  He yelled out "MATT?" and through the names of the oldest they went on passing the mantle of blame from one to the next.

Remember, this is a woman who had already had nine kids, and I swear they all have their own personal guardian angels because it is just about impossible to keep up with a crew that size!  They are a very close knit family.  I have a sticker that quotes George Burns as saying "Happiness is having a large, close, loving family in another city."  Well, George didn't know this family at all.  They are tight, and it shows, especially when everyone comes home to the roost for the weekend which happens frequently.

Eddie was an early achiever.  He started walking at 8 to 10 months and had to wear glasses as a baby because of a problem with lazy eyes that eventually was corrected.  He was babied, being the youngest of the ten.  We frequently referred to him as Thunder Eddie.  I swear, this boy is 25 years old now and will probably get carded in bars for his entire life he has such a baby face!  Joey is the oldest, and he turned 18 a mere 3 months after Eddie was born, so there is nearly the lifespan of an adult between them.

Flash forward from the baby in the street to the groom in the wedding March 10.  We were able to attend (thanks to my mom for sitting with our dogs on her 88th birthday).  We went to the wedding and the priest was marvelous, the service stunning; I really can't think of one negative thing that happened during that wedding.  Megan was beautiful and I'll tell you, they looked so much like a story book wedding cake topper!

This family and their cousins, aunts, uncles, etc. have a tradition of singing The Old Crow Medicine Show's "Wagon Wheel" at events; or maybe because they're in the mood for a good tune and they all love this one.  I've known the lyrics forever and most everybody else in the family does too.  Mid way through the reception, which was about an hour into the dancing portion, the DJ queued up the song and as soon as those familiar strains from the acoustic guitar played and the fiddle joined in, everybody was up.  I'm walking with a cane these days, but I said to Connie "I've gotta get up and sing."  So I got up, caned my way to the growing circle and found a place on the inside where I could be supported by my neighbors if I stumbled.  Eddie came over and said "Come on, Jennifer.  You're dancing with me."  I said "Eddie, I don't think I can stand up."  He said "I won't let you fall and I'll get you back to where you need to be."  My heart melted.  This kid whom I have known for his whole life singled me out for the dance to what is probably considered the family mantra.  I can't hear that song to this day without having a tear form in the corner of my eyes.

We had a great time on a whirlwind weekend.  I was exhausted. I had taken a nap between the wedding and the reception, but still stayed in my jammies all day Sunday. We flew home to Florida on Monday.  I went to work on Wednesday.

A couple of weeks ago, I was at work, listening to Spotify on my headphones.  The Wagon Wheel shuffled up, and I texted the group and said "Wagon Wheel shuffled up, and I felt like singing.  So I got up and closed my office door, started the song over and belted it out."  Rachel responded right away and said "Of course you did."

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.

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.

Chapter 13: Snail Mail & Blogs

Chapter 13: Snail Mail & Blogs

I know you InfoTechers will be astounded by this, so I'll  speak the words v-e-w-y, v-e-w-y s-l-o-w-l-y.


There are people in this life that DON'T own a computer.  Most of these people also do not own a cell phone and those that fall in between own something that isn't smart but is very gymnastic (i.e., it can do a flip).  They still rely on land lines and the US Postal Service. So, I want to give a shout out to my favorite snail mail followers.
                   

Meet Ed and Betty.  I'm not going to put their full names into into this blog, because invariably it will invite some nefarious actions from unscrupulous people.  In other words, someone may try to scam them.

I've known Ed and Betty for many, many years.  They are grandparents to some of my best friends and great grandparents to even more.  When Connie and I flew north for the wedding in May, they sat in the pew in front of us.  They are just a darling couple in their mid 90's.

Later at the reception,  we were seated at the same table as Ed.  Betty wasn't able to make the trip to the reception, which was kind of in a barn in the middle of nowhere.  Ed made a specific point to get up from his seat and come over so that he and I could chat.  He was very interested in my condition and kept telling me they would pray for me.  I committed to sending him paper versions of my blog posts and any random pictures I would run across (I have like a bajillion digital pictures and a 4x6 photo printer that works pretty darn good).

Well, sometime last week Connie got a phone call from her niece who was visiting her grandparents Ed and Betty, and also had her kids along.  Ed asked to speak to me, and I was flabbergasted at what he said.  He apologized to ME for not doing a better job of communicating.  This loving man who is in his golden years, not terribly mobile but still moving around was apologizing for lack of communication.  He told me that I was very good with words, and he knew the words and their meanings, but didn't have the ability to put them together the way I could.  I thanked him but told him any communication I got from them I cherished.  I told him that I had not been very expedient in posting during the month of July because it frankly was not a good month, and I had suffered a lot of pain and discomfort and anxiety during the month.  He said he was afraid that may have been the issue.

When the phone call was nearly concluded he asked if they could sing a song for me and I said "absolutely" and put my phone on speaker.  I couldn't figure out how to record the audio, but there are versions of these songs being sung by them at many weddings.  The lyrics are:

May God's grace go before you

May His love enfold you

May His mighty arms uphold you, protect you

Til we meet again, go with God

70th Wedding Anniversary Photo

And the final tune was:

May God bless you with His love

Always fill you with His love 

May He hold you in the hollow of His hand

For the Lord is with you in goodness and love 

May His light shine out in your heart

I hope this encourages someone out there to "pay it forward".  Do something nice for someone, maybe someone you don't know or do something anonymously for someone that you do know that has a need.  Meanwhile, you can thank Ed and Betty for the blog post.  They are very inspirational.

Chapter 12 Meds and Side Effects

It's inevitable.  If you take certain classes of drugs for pain medicine, a lot of very odd things happen to your body.  I started this chapter thinking I was going to describe in detail the effects, but quickly realized many of these would not be appropriate for my family-based blog.  Instead, I've decided to play a word-association game in this post, where I will imply what the undesirable side effect is and invite you all to imagine it, realizing some of you may have context and really "get it", whereas others are lucky enough to have not experienced anything like it.

So here we go.

A. Constipation:  Also referred to as "Stuck in the middle with poo."  A very painful condition where your digestive track pretty much turns to concrete.  Can last several days.

B. Diarrhea:  Also referred to as "the breaking of the damn" whereby condition A is alleviated by condition B.  This is a cyclical series of events where one just repeats A, then B, then back to A and B, etc.

C. Incontinence (pronounced in continents).  Unbelievably, this has hardly anything to do with traveling the continent of Europe, staying in youth hostels and hiking around the Swiss country side.

D.  Bertie Go (actually spelled Vertigo but I'm positive this is they're saying) Bertie Go).  I wasn't really sure about this one, but it seems to be related to someone named Bertie who can't tell down from up and falls down a lot, possibly due to extreme dizziness.

E.  Partial hearing loss from whole brain radiation.  (Might explain Item - D Bertie Go).

F.  Extreme fatigue - Sorry.  I fell asleep while writing this.

G. Cold symptoms - stuffy nose, congestion, etc.  If you have allergies you pretty much endure this all the time.  I was on allergy shots before all this happened and had to stop.  So I'm getting this one doubly bad.

H. Back pain - if you've been reading this whole blog, you're likely aware that back pain is where the journey began.

I.  Broken bones - that's right, some of these meds cause bone weakness that makes it a lot easier for a patient to bruise or break a bone.  Couple that with the fact that I have bone damage from the cancer, particularly in my spine, and you'll know why I walk with a cane.  I can't afford to fall down go boom!

J.  Numbness/tingling legs.  This one has caused me to sit on the edge of the bed at night and rub my legs.  I don't think there is anything about numbness that is comfortable, as Pink Floyd would have you believe.

K.  Inability to make strong decisions.  I don't think I've suffered from this particular side effect, but I may have at certain times.  I couldn't really decide whether to even mention it in this posting.  I asked Connie and Mom and both said it was my decision to make, and I agree with that; so I flipped a coin.  Heads for yes, post it; tails for skip it.  It was tails so I went for best of 3 flips.  Tails prevailed again but to ensure I'd considered all aspects of the decision before making it, I drew straws, played some mumbly peg and in the end threw a dart at a paper on the wall that had the words "Post" and "Don't Post" on opposite sides.  It came up post so here it is.  Of course I can't decide what to say about it so I'm just going to let you all figure it out for yourself. Be decisive.  That's my advice; I think.

L. Blurred vision - I hope Robin Thicke and Pharell don't read this; or Marvin Gaye for that matter.

M. Insomnia - this is quite possibly the bane of my existence.  If I can't sleep, I can't function the next day.  If I take too many sleep aids, I can't wake up all the way the next day.  So between the fatigue and the insomnia, it's a tough row to hoe.  I had an employee in Ohio who asked me once "what's a rode-a-ho?"

Sometimes these can happen more than one at a time, and if it does it is very difficult to deal with.  Especially if it involves any part of the digestive tract.  Planning is essential in these times as you can't ever tell when a situation might become urgent, if you know what I mean...  All in all I find it better to stay close to home as much as possible.

There are many other potential side effects.  These are only the most common.

In my next post, I'll be talking about the cyber-knife experience from December of 2016.  I'm catching up to real time, slowly but surely.  If I had started blogging from the beginning, I think I'd be current, but at that time it just seemed too daunting of a task and I wasn't comfortable sharing a lot of this information.  Now, as intended, I'm finding it helps me keep a good attitude, and also like the fact that I may be helping other people struggling with this (or any) disease to cope and see the good side whenever possible.  Please feel free to share the link with anyone you think might benefit from the content.

Take Care,

JenMc