Wednesday, May 31, 2017

Chapter 06: Breaking News

Breaking News - Back to the Future


Times of struggles are difficult to endure.  I am struggling to tell this story in chronological order because something may happen this week that I want to share, and it doesn't seem logical to have to wait to post it.  So I'm going to title any post that flashes forward as "Breaking News."  In the chronology of this blog, we left off after "I Love Lucidity" , which was the end of my initial radiation treatment.  The next logical post would be starting somewhere around October 2016, but I need to interrupt that chain so that all of you know where I'm at in my current treatment and progress.

I had a PET Scan around May 8, 2017.  The results were remarkable. Many of the tumors that were in my lungs and liver were invisible.  A few remain but are still shrinking; preliminary conclusion being that the immune therapy is working.  The only thing the PET doesn't show is what is happening in my brain.  For that I needed an MRI.  I had that MRI on a Friday and when the doctor came in to deliver results, she started out with "it isn't good."

Long story short - that's why I haven't posted anything new for a while.  I wasn't really sure how I was going to approach this.  Then I came up with the "Breaking News" idea as a way to deviate from the chronological time line of the blog.  I have another MRI scheduled for the end of June and visiting the doctor the next day to discuss results.  There are several theories being floated about why the brain isn't responding the way they had hoped, but in order to see clearly the growth pattern and rate, I can see me having frequent MRIs during the summer time.  I have, in my opinion, 2 of the best oncologists in Gainesville researching all over the country to determine next steps.  I was ecstatic for a day and walking on the clouds, then the MRI results arrived and I've been somewhat depressed since that time.  I try not to spend too much time in bed because that tends to just deepen the depression.  So I went in to the new building to get the 50 cent tour last week (thanks, Shanna) and my friends there are helping to keep my spirits up.  They are also protecting "The Duke"; someone who moved here with me from Ohio and I heard there were some stalkers at the Farm Bureau before the move hoping he got "lost".  Thanks, team, for protecting Rooster Cogburn in my absence.  

Wednesday, May 10, 2017

Chapter 05 I Love Lucidity

I hate to repeat myself, but I'm struggling over how to NOT turn this into a rant against insurance and the health care industry.  So before I get started on the AH phase (after hospital), I want to share something infuriating that happened last week.  I had a PET scan scheduled for Friday, May 5, then a follow up with the oncologist to review the results on the 9th.  Insurance received the request a good 2 weeks in advance, and yet did not start the authorization process until Thursday the 4th.  Now this test, on my end, requires some preparation mostly in the food I eat or don't eat. For the 24 hour period before, no carbs, no sugars, no fruits, no milk, no alcohol, pretty much nothing but meat.  Now don't get me wrong, I love meat but when I saw the dietary restrictions, I really wanted a big bowl of Cheerios with a sliced banana and chocolate chips.

At or around 4:40 PM on Thursday, as I was munching on a raw hot dog, the phone rang.  It was the Cancer Center telling me the insurance authorization had not come through and they were going to need to reschedule the scan.  I asked why and he said "don't worry - the person on the phone told me they are going to approve it, it just won't be in time."  Does anybody else find this completely ridiculously inefficient (not to mention STOOOOOPID)?  I found out this week when I called to reschedule it that the authorization had come in just 10 minutes before the scan would have occurred.  The thing about PET scans is they have to inject you with some nuclear concoction an hour before the actual scan is done.  They take you in a room where soft music is playing and the lights are dim, inject you with the plutonium or whatever it is, then you sit for an hour until they peek back in and see that "yes, the patient is now glowing.  Move her carefully to the procedure room, mindful of not jostling her because she is, after all, armed and dangerously nuclear."

That's pretty much all I have to say about that.  I've already hijacked half this post to tell the above story, and you know you can't make this crap up.

Back to the story; I was released from the hospital on August 11, 2016 a mere 4 days after I was admitted.  I'm going to recap everything I remember about that week in the hospital.  First, they served me a turkey and Swiss sandwich capable of surviving longer than a cock roach.  Second, they removed the tumor in my head and served me more incredible food (anyone ever notice how the word "incredible" contains the word "inedible"?).  Third, they played this game where every time I started to doze off, they'd burst into the room and yell "surprise!".  One time they actually woke me up to see if I needed a sleep aid. I can see why that 4 day stay cost almost a quarter of a million dollars.  I mean, they have to think of reasons to wake you up, and they have to hire world class chefs who have been featured in Conde Nast publications. Given all these extenuating circumstances, I'll stop complaining about the bills and the food; at least long enough to finish this post.  After all, it's not a Motel Six. It should cost more.  They even turn the light off for you.

The first post-hospital doctor appointment was with the radiation oncologist.  That occurred on August the 15th, 2016 and outlined the plan for alleviating my back pain.  Remember I'd been suffering from chronic back pain for nearly 2 years.  I think when Dr. W told me she could get rid of that pain, for just an instant I didn't care that I'd been diagnosed with cancer; I only heard "I can relieve your pain".  I knew that would help with my attitude and ability to fight the disease.  I can tell you that if my back hurt now as bad as it did then, I don't think I would be here penning this blog.  This is also the doctor who had the task of getting rid of some smaller lesions on the brain.  From what I've read, most brain cancer originates from lung cancer; rarely does it start in the brain.  But the brain is smart enough to go looking around your body to see what it can find and claim as its own.  Damn brain.  So I had either dozens or hundreds of tiny lesions in the brain that needed to be eliminated.  This was a little difficult for me to wrap my head around (tee hee), because I was more concerned with the cancer in my lungs.  Then I realized if they didn't treat the head first, there would be no reason to fix the back and lungs because I'd be vegging out somewhere unable to do much of anything (except veg out).  So the plan of attack for the radiation phase of the treatment was to start treatments immediately that same week - 10 on my back and 12 on my head.  They gave me anti seizure meds so that I would not seize again, suspended my driving privileges for 12 months (assuming I didn't seize during that period), and also prescribed some steroids and pain meds.  I had been having some serious cognitive issues after I was released from the hospital, and it turned out they were supposed to prescribe a steroid to reduce the swelling in my brain.  It was really weird not being able to figure out how the tooth paste and tooth brush worked together, simple things like that which I'd been doing my whole life.  When I got in the truck the first time to go to the Cancer Center for an appointment, Connie had to come and buckle my seat belt for me because I just could not make it work.  Man, if only I was actively involved in a software development project at that time.  It would have been fun coming up with requirements for how my screwed up brain envisioned the software should work.

In preparation for the radiation treatments on my head, they had to make me a mask.  They heat the
plastic and then form it around your face while it is relatively hot still because it needs to be a snug fit over my
face, and then they snap it to the radiation table. Sort of reminded me of the table in Dr.Frankenstein's lab ("that's Fraankensteen").  They first make the mask and do a simulation of the radiation so they can carefully plan out which part of the brain needs more or less treatment.  If they zap healthy areas, or over/under dose any areas, the consequences are pretty dire.  So the "mapping" session took a lot longer than an actual radiation treatment.  I don't usually get claustrophobic, but being attached to the table with a hot plastic mask is not fun.  You can't really tell from the picture, but the plastic is only pliable while it is hot and so you have to lay there while they are fanning your head with magazines to get the plastic to set firmly.  Once they have the mask and the mapping done, they can proceed with the treatments.  They do the mapping session prior to any actual radiation, because the radiation oncologist has to get the opinion of a physicist to ensure he doesn't notice any inaccurate calibration of the machine.

The spine doesn't require any masking, and they can do the multiple treatments in a session .  I had a total of
ten treatments on my brain and twelve on my spine.  They occurred on consecutive business days, so I completed my last treatment during the week of Labor Day.  The Cancer Center makes a big deal over your final radiation treatment (and I think actually this is common among radiology treatment centers as I've seen pictures of ship's bells in a lot of my travels around the web).  I rang the bell loudly, they took pictures and I received a certificate. Made me feel like a college graduate again (okay, that's maybe over the top).  Anyway, I know that's a horrible picture of me, but it reminded me to tell you that the minute I saw a tiny clump of hair on my pillow, I made an appointment the next day for Laura to shave my head.  I'm also about 45 pounds lighter now.  Some hair is growing back but it is coming in curly. The only time I had curly hair in my life was during the "perm years".  What was I thinking?

Results are not available instantaneously, because the radiation continues to cook your brain or spine for as long as 4 weeks; they are not quick at scheduling the after scan.  They decided a 2 week break before starting any new treatments on the chemo side.  Radiation makes you sick, your hair falls out at the radiation spots, and you sleep at least 16 hours out of the 24 in a day.  You just feel awful and you have zero energy.  I was naive and thought that I could probably work 20-30 hours a week.  I quickly learned how sick I really was when I would commit to non-achievable deadlines and then feel like I was inadequate because I couldn't work.  It was the strength of my Info Tech family that got me over that feeling.  Everyone told me to not worry about it; and so I stopped worrying about it and I started to get better, at least from a mental perspective.

Next up, I'll start discussing the Chemo Period - which actually is still ongoing at the date of this writing.

Take care until next time.
Jennifer










Wednesday, April 26, 2017

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$$#@&{?


Wednesday, April 19, 2017

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.



Tuesday, April 11, 2017

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.