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."