Chapter 04: This is My Brain...

This was my brain on cancer.

                                                                               

This is my brain...

You know that saying "It ain't brain surgery"?  Well this actually was.

I had the scan on the right the morning of August 09, 2016; the day after the seizure occurred.  I had a lot of tests in the ER before being admitted, and then a continuation of testing on the morning of the 9th.  You can see the egg shaped tumor in the image.  The scan on the left is after the resection.  I looked up the word "resection" for my own edification, and will put it here in laymen's terms for the readers of this blog.  A resection of the brain tumor basically means the tumor has been removed.  Then they bring in tiny farm implements to plow, till, and disc up the area, and ensure it is relatively level so the piece of your skull they removed to get to the tumor fits back in there properly, kind of like a jig saw puzzle. Sometimes fill material is required, and I can't prove it but I think this is the manner in which the recycling industry deals with styrofoam peanuts.  They put the piece of skull back in place and caulk up the seams.

Because the seizure occurred after work and before dinner, there wasn't really time to consider what I might want to eat. You know, like maybe send out for pizza or something like that; so instead they brought me a turkey and Swiss cheese sandwich somewhere around 10 PM. I was frankly hungry because I hadn't been eating hardly anything.  Well, turkey isn't my favorite and I haven't been able to stomach Swiss cheese since late December of 1978 when Woody Hayes got fired for punching a Clemson football player after he intercepted a pass and ruined our chance for a bowl game victory.  I don't think it had anything to do with th party I was attending; or the full keg of beer that was consumed; or the fact that we ran out of real food and had only cheese and crackers; or the fact that the crackers were quickly consumed and we were left with only Swiss cheese and beer.  All of that is circumstantial to my dislike of Swiss cheese.

 Excuse me, I'll need to go get my nausea meds before I can continue.

Anyway, back to the sandwich.  I was starving and so I started to take it out of the plastic wrap in which it came hermetically sealed, and I noticed the expiration date.  The date was sometime in the fall of 2019.  I don't even want to imagine what they have to do with cheese, bread and turkey meat to get it to last for 3 years.  It tasted as good as it sounds.

 I don't remember much of what happened while I was in the hospital other than I was admitted on August 8 and discharged on August 11.  During that time I had several different tests and of course the tumor removal.  I recall waking up at some point, I believe it was the morning of the 9th and a doctor was sitting next to the bed.  There was no one else in the room at the time and he had results of scans and such.  My memory maybe isn't terribly accurate for this conversation, but I'm positive that he said "lung cancer, stage 4, 6 months".  I was devastated.  In my room, alone, he gave me 6 months.  Connie got there shortly thereafter (she had been home feeding and tending the dogs), and when I told her she was very upset with the doctor for giving me the news in the manner he did it.  She raised a stink.  Oh, and incidentally, the 6 months was up the first week of February and I'm still here.  Woot!

The source of the cancer was in my lungs, but it had spread to my bones and brain by the time it was diagnosed.  The first order of business was to get the tumor out to hopefully stop me from seizing again. The pathology of the tumor was needed before a course of treatment could be defined.  Oh, incidentally, the insurance company first denied the pathology work for the tumor saying it was not medically necessary.  a$$#@&{?

Later in the day, I had the brain surgery. The surgeon who removed my tumor came in the next day and told me I was his favorite patient ever because as I was coming around in the recovery room, I actually took a swing at the anesthesiologist.  He said it was a very nice right upper cut that barely missed his chin. His only regret is that the punch didn't connect.  He also said that I should consider that I have a chronic illness, like diabetes, and as long as we could control the symptoms we could probably control the disease.  His approach to cancer gave me the ray of hope I needed.

I also met the radiation oncologist during the course of that week.  She said the first order of business was relieving the pain in my back.  We scheduled an appointment with her to discuss the approach.

There was a lot of other activity in the room while I was there, and it seems like someone was always there smiling at me when I woke up.  My mom and sister from Ohio flew down the day after i was admitted.  Connie's brother and sister-in-law couldn't get a flight so they jumped in the car and drove it.  They arrived here the day I was released from the hospital.  While I was in the hospital, Monelle and Teresa were both regulars.  They were there for Connie as much as for me and we're very grateful to them.

And speaking of the hospital, the bill for in-hospital services was over $220,000.  That didn't include the surgery, anesthesiology or other extraneous items.  Evidently the preservatives in that turkey and Swiss sandwich are pricey.  a$$#@&{?

Chapter 03: Buckeyes

Buckeyes - Nothing but worthless nuts, right?

I'm going to take a moment to interrupt my regularly scheduled posting to post this public service announcement.  I find I'm having a hard time writing about the beginning stages of my battle; it's going but it's going slowly.  So I want to discuss something very real and something we all need to take seriously.  It's the buckeye.

Many people believe it is a worthless nut.  You can't eat it, you can only collect so many before you are overrun with the quarter sized round nuts.  You can drill holes in them and use them to construct all sorts of obnoxious and gaudy jewelry (I have some extra necklaces if anyone wants one).  I'm only going to attempt to debunk one of these points.

A buckeye is not a worthless nut.  According to folklore, the Wyandotte Indians considered the buckeye to be a symbol of great fortune and continuous luck.  I firmly believe that is the case and actually have many buckeyes in various locations in my house. I decided, along with Carmen's help, that every Info Tech employee in the Gainesville office needs a buckeye to carry with them when we move from the Farm Bureau to the shiny new facility at Celebration Pointe.   I believe that if we all believe it will bring the company good fortune, than we can continue our success into the future and sustain the wave of good fortune that seems always present for Info Tech.

So my message to all of you is to to get a buckeye and carry it in your pocket.  For you Info Tech employees in the Gainesville office, my message is a much simpler one.  When you leave the Farm Bureau for what will ultimately be your last time in that building, don't forget to grab your worthless nuts on the way out the door. Our survival depends on it.

Chapter 02: Seizure Salad, Anyone?

Before I get to the details of that day in August 2016 where my life was forever altered, I need to tell the back story.

I had suffered from chronic back pain for over a year.  The pain became more of the acute variety in January of 2016.  We were rearranging furniture, moving a recliner off the lanai and in to the house.  There's about a four inch step over which I had to lift the recliner's base in order for us to drag it back to the bedroom.  When I lifted, I felt something terrible in my back immediately.  I always thought that I would have the same back issues as my mother, who had major back surgery July of 2011 at the age of 81 to correct stenosis and bulging disks in her lumbar spine.  So, stubborn and doctor shy just like my mama, I tried a lot of home remedies before succumbing to the inevitable appointment.

I remember one evening, probably in the month of April where I sat on the back patio with Connie and cried.  I cried because I was in so much pain, and I didn't know if I could go through it much longer.  Little did I know that this pain was the tip of the iceberg.  I ordered zero drop shoes to see if that would help, and I walked 10-15,000 steps daily.  It felt a lot better when I walked, and I kept telling myself the more I walked the better I'd feel.  I even bought a treadmill for under my desk.  I had been standing at my workstation for a couple of years, so the treadmill under the desk seemed like a good idea.  I didn't even have a chair in my cube, because I never sat down.  I started standing in meetings. I went to my family doctor first who put me on Meloxicam to see if that might calm it down. I went back several weeks later after not feeling any relief.  She sent me to an orthopedic specialist at the UF Orthopedic clinic, which of course took several weeks to get in.  I talked at length with the doctor and she felt an MRI was appropriate.  So she ordered the procedure and it was scheduled for July 7, 2016.

Enter the insurance company...  If I had one word for the insurance industry right now, I think it would likely be a$$#@&{?  Anyway, I went to the MRI appointment and was very happy that I would finally get some answers.  When I got to the facility, I found out the insurance company had denied the MRI because I had not demonstrated that I had attempted exercise or other methods to manage the pain.  My biggest beef is that I didn't find out about the denial until I arrived at the facility.  I did get a letter, but it was two days later.  It essentially said "complete 10 sessions of physical therapy and we'll reconsider."

So I started PT at the UF Orthopedic facility on 34th Street in Gainesville.  They were simple stretching exercises using a rope looped around my foot, contorting my back into many positions.  The first session wasn't bad.  We always started with the pelvic tilt, where I was on my back with knees pulled up, feet on the ground and raising up a couple of inches so my back was off the table and holding that for 10 seconds.  Of the 5 sessions I completed, there was only one session where I was able to do that.  Two of the five, I couldn't do anything so the therapist had me just lay on an ice pack while I was there.  Cost me $500 to lay on ice.  a$$#@&{?.

I had an onsite trip scheduled to New Jersey to conduct a train-the-trainer class for AASHTOWare Project Estimation.  The trip was scheduled to occur with travel on August 1, and class the 2nd through the 5th.  The flight out of Gainesville to Atlanta was quick and uneventful, but I could not get out of my seat without some considerable effort.  From Atlanta to the Philadelphia airport, as soon as we reached cruising altitude, I was on my feet.  I stood the whole flight in the aisle next to my seat because sitting was so painful.  I stood that night in my hotel room and ate from the vending machine.  I had taken a yoga mat so I could do the exercises in my room.  I did them once on the floor and almost couldn't get up; I decided not to try again.

The next day I went to the DOT and conducted the class that week almost 100% of the time on my feet.  Flight home same deal; I stood in the aisle way. I got home on Thursday evening, because we had completed the training class early.  Since I had some follow-up work related to New Jersey processes, I went into the office on Friday.  After that, I collapsed for the rest of the weekend.

Monday morning, August 8, 2016 - first thing I did was text my sister in High Springs "Happy Birthday, Nanny Goat."  She texted back "Thanks Gingie".  I went in to work earlier than usual that day because of a week long training related to Construction.  I was in and out of the training that day, trying to follow along but trying to catch up with everything else I was behind on because of the on-site training trip.

I left the office at about 4:35, 25 minutes prior to the end of the first day of the Construction overview.  I just felt wiped out and sort of "weird", like a floating out of body experience.  I pulled up to the intersection of Williston Road and 34th Street in the far left turn lane.  I was first in line.

I remember feeling like I was caught in a downward vortex, things were quickly going black and I was sure I was going to die. I was worried about Connie and how she would handle this.  I remember trying to put my truck in park, but I couldn't because by now I was shaking violently.  I somehow managed to turn off the key and open the door.  That's all I remember until I woke up in the ambulance about 40 minutes later.   The EMT told me that there was a nurse somewhere behind me and a woman who was out of her car flagging and waving for people to help.  Someone called 911 and the ambulance arrived within minutes of that call.

In the "small world" category, weeks later Connie was out at Micanopy to get her hair cut at Local Color Salon (next to Pearl's).  Connie was relating to Laura Jupin, the hairdresser, what had happened to me at that intersection.  Laura said that she had already heard that story from Wendy Gales who worked at the Pearl at the time.  Wendy was the woman who was directly behind me at the intersection, and who I believe was a key player in saving my life.  When I went to see Laura later during treatment for a complementary head shave, Wendy came over and I was able to thank her.  I never did know who the nurse was but am incredibly grateful to him as well.

When I woke up in the back of the ambulance, one of the EMT's was asking me if I remembered what happened.  It was like being in a daze, I couldn't figure out how to answer.  He told me they had pulled my truck into the Nationwide parking lot across the street and locked the keys inside.  He asked me to unlock my cell phone and if I could, choose from my contacts and let him call someone.  Of course I have Connie on speed dial and he called her.  making sure to tell her I was okay and then explaining what had happened. He told her we were going to North Florida emergency room.  She called my sister in High Springs and several other people.  Nellie came and got her to get the truck and drive to North Florida.

I don't remember a whole lot more about what happened at the intersection, but I remember that was the longest ride of my life in that ambulance wondering if I would ever see my friends and family again.  Something that still makes me shiver at night when I'm trying to sleep.  This blog post has likely been the most difficult that I will write, because it forced me to go through the onset of my illness.  That is why it has taken me so long to post it.  It was just very difficult.

Now I get to write about the fun part of cancer, you know, like brain surgery.

Next up: at the hospital.

Chapter 01: Carpe Diem

car·pe di·em  (kärpā ˈdēˌem/)

Exclamation:  used to urge someone to make the most of the present time and give little thought to the future.

I’m going to eventually tell the story of my seizure, symptoms, illness, treatments, meds, and all that other happy crap that goes along with having cancer.  But first I think there is some really important stuff I need to say to my support team.  Please don’t feel slighted if you look for yourself and don’t find anything; I consider a lot of people as part of my support team.  Likely too many to list individually, even if I wanted to.  Rule of thumb, I’m not naming names except in specific situational events.  There are people, like me, who have a serious phobia in regards to social media. There are others with a desire to stay anonymous.  To be sure I comply with everyone’s privacy, I’ve made the decision that everyone in this blog will be anonymous except for Connie.  Oh, and me.  Oh, and my dogs. Oh, and mom.  But that’s not her real name anyway.

The leader of my support team is Connie, and anyone who knows her knows she doesn’t give up nor does she like to lose.  She has been my best friend, companion, and soulmate for over 35 years.  I don’t think I would be here today if it weren’t for her will and strength, and her ability as a natural caregiver.  I have no doubt that we will continue on as we have in the past well into the future.

My yankee support team includes my sister and her husband, as well as their kids (2 plus spouses) and grandkids (4 between the two families).  Shout out to my big sister in Ohio for always being in my corner.  

It also includes Connie’s family of which I consider myself a part.   She has:

2 brothers plus their spouses.

4 sisters plus their spouses.  

30 nieces and nephews ranging from 23 to 57 years young; some of whom have spouses.

55 great nieces and nephews. some of whom have spouses.

5 great-great nieces and nephews, plus 2 more buns in the oven.

Obviously, this list is dynamic!

My southern support team includes my mom; she’s been here more than she’s been in Ohio over the course of this illness so I’m going to classify her as a southerner.  I don’t know what I’d do if mom wasn’t here.  I know she has to go back to Ohio eventually, but I’m not at all in any hurry to send her up there.  She has been a comforting soul when I needed it the most. I also have a sister and her husband in High Springs and a nephew in Gainesville.  They have been tremendously supportive.  My sister stops by at least once a week.  She’s the reason I was called Gingey (gin-gee) when I was growing up; she couldn’t say “Jennifer.” She still can't... (just kidding, Nanny Goat).

I’m actually lucky in that I have a third family  within Info Tech, both here in Gainesville and also in remote locations across the country.  I came here in June of 2009 after retiring from the Ohio DOT in February of that year. Within the first 2 weeks of retirement, I realized I couldn’t possibly live the retired life, and I applied for a job at Info Tech.  I was familiar with the company having had business interaction with them in the mid 80’s. I already had several people there whom I considered true friends.  I always thought I would love working for this company, and I wasn’t wrong.  They treat employees like family.  After I had the seizure (more detail to come), I was just in shock over the outpouring of love and support I received from my Info Tech family.  There were so many cards, flowers, emails, etc. that I couldn’t keep up.  From the company’s founding fathers to the business managers, subject matter experts, developers, IT support, administrative support -  really I don’t think there was any area of the company that I didn’t feel the outpouring of their collective support.  I have to conclude, logically, that Info Tech is the greatest company in the world.  Honest.

One of the people who sent me a card almost immediately works in Consulting at Info Tech.  I had not had a lot of contact with her, given we worked in different business units, but she reminded me in her card that she and I attended the same new employee luncheon in 2009 with the founder of the company.  She said in the card she realized I might not even know who she is, but I do.  She is the epitome of a good person; she barely knew me but she knew I was a part of the Info Tech family and I was hurting; and so she prayed and wished and blessed and everything else that good people do.  I’m going to hug her the next time I see her.  I also would love to nominate her for Employee of My Life, but we only do Employee of the Quarter, so probably not going to happen.

Speaking of the next time I see her, while I continue to work for Info Tech, I likely will not be returning to the Farm Bureau building.  For those of you not familiar with Info Tech (other than the praise I heap on the company here), we’ve been in the Farm Bureau Building renting space for over 30 years (I think but accuracy isn’t the real intention of this blog).  We, as in the familial “we”, are building a brand new facility at Celebration Pointe.  I’m pretty sure we’ll be moving in during the month of April. Some Info Tech folks at the Farm Bureau building already packed up my stuff for me (thanks, ya’ll for packing).  Then Connie and I swung by to pick it up at the loading dock (thanks, ya’ll for bringing it down).  Then of course I have to thank InfoTech again for allowing me to work from home (WFH) whenever I’m able.  When my journey first began, I wasn’t able to work much and terribly worried about my productivity.  Every one at Info Tech seemed concerned more about my well-being, and told me I shouldn’t be fretting over anything except concentrating on getting well.  That’s family. No, that’s caring; or is it loving; or is it compassion?  Ahhh, yes, it is a caring, loving, compassionate family.

Another person who I want to call out anonymously is unknown name/unknown number (caller ID/robocall humor).  He sent me the little guy shown below.  He’s about 2 inches tall, and there’s a story behind him for which I’m not ashamed to directly plagiarize from the email I received  asking for the history on the Friar.

“The little Franciscan friar I picked up in Assisi, Italy. My friend's dad prayed to Saint Francis when he was going through cancer. So we went to Assisi to pray there when we were in Italy. I said a prayer at his tomb when i was looking for a new job and lo and behold I got the job (somewhere) shortly thereafter.  He has sat on my desk ever since so I wanted to pass him on to you so you know I am always saying a prayer for you.  I hope he brings something positive to you each day.” - Anonymous (but I know who it is and consider the person to be a very good friend).

Then there are my old classmates from high school; some of whom (most more accurate) I haven’t seen since we graduated in 1977.  I have heard from so many people, largely thanks to my cousin and good friend.  I wasn’t well enough to respond to many of the emails but I am now (but of course, I have become obsessed with this blog now).  So, a collective “thank you” to the USHS Class of 1977!!!

Lastly, my team includes my 3 best buddies shown here in their Easter outfits:

Woody

                                                         

                   Finn                                                                                         Brutus

I’ve always been a “thank you” card person, so I’m going to publicly apologize that I fell off the thank-you card train with this illness.  I’m intending for this page to be a tribute to all of those in my support network and families.  Friends have dropped off tons of foods, and I’ve gotten gift certificates to just about every place in town.  Thank you all.  Without your prayers, wishes and especially the cookies and homemade pound cake, I don’t believe I would be here.  I love you all.

Next up, let the journey begin.