Chapter 08: Bern Baby Bern's

Chapter 8: Bern's Baby Bern's; 

or 

Making the Most out of a Second Opinion

Once the radiation treatments were done in mid September, it was time to take a break.  The two doctor's decided I should wait at least 2 weeks before continuing with any additional treatments.  Dr. P had identified several clinical trials; some involving chemotherapy, some immunology, some combinations of chemo and immuno drugs.  Florida has more cancer clinics than any state in the union, and also arguably among the country's best.  I asked Dr. P if he would mind if I got a second opinion, and he said he would welcome it, and told me to choose where I wanted to go.   I had lots of choices, like Florida Hospital Cancer Institute, Morton Plant Hospital, St. Joseph's Hospital Cancer Institute, the Moffitt Cancer Center just to name a few.  I chose carefully with some pretty particular criteria.

1. Reputation - The Moffitt Center is the number 1 rated cancer research facility in the this part of the country. No brainer there (sounds kind of funny considering I'd just had a brain tumor removed - tee hee).
2. Wait time - They could see me during the two week break before treatment was scheduled to begin.
3. Insurance restrictions - Of course they won't tell you until the day before you go, but I did manage to wrangle an approval via my extremely helpful case worker.  I'm not being sarcastic; shout out to Marian in Cleveland.
4. Location - Since all of the facilities were at least 2 hours and less than 4 away by car, this really was not a factor. We had already decided to spend the night so that I would didn't have to get up and travel to an appointment that I was told could last as many as 3 hours.  
5. Location - Given #4, a suitable hotel within proximity to Moffitt and a decent restaurant.  I mean, why not make a party out of this adventure? 

Monelle said she would go with us to help with logistics, etc. We put her in charge of hotel and dinner reservations.  She chose well!  The Epicurion hotel, located almost directly across the street from Bern's Steakhouse.  If you haven't been to Bern's, everyone should go there at least once!  You get to tour the kitchen and wine cellar.  There are some 600,000 bottles in their cellar at one time; the most expensive being $30,000.  They age their beef on the premise. It is by far one of the best steaks I've ever eaten, and among the best dining out experiences of my life.  I think they had many other choices on the menu, but if you go to the oldest steakhouse in Tampa, do you really want to eat soup and a salad?  NO, I say. NO.  Where's the beef?

  

The next morning we ate breakfast and checked out of the hotel, then headed to the Moffitt Center.  It was a very impressive facility and extremely efficient at getting people in and out.  They also employ what appear to be middle-school aged kids as doctors.    I'm going to summarize the findings here to just say that the Doctor at Moffitt agreed 100% with Dr. P's recommendation to shoot for a specifically identified clinical trial.  They were both concerned that I might be precluded as a participant because of my previous bout with melanoma.  They tried very hard to get me in, but in the end the study stood fast and said no exceptions; a participant cannot have any history of cancer to be included the study.  There was another study identified, but the requirements of that one were that the patient could not be "chemo-naive".  In other words, we had to have a failed chemo under our belts before I qualified for something that had a snow-ball's chance at succession.  The doctor's all put their heads together and made me an appointment for 2 weeks later, allowing me to rest up more from the rigors of radiation; and also from beef overdose.  

A break might sound like a good idea, but the reality of the situation was that I knew there was this terrible disease hanging out in various parts of my body, and all I wanted to do was to stop it from growing.  Well, truthfully I wanted them to cure it, but I know that is not realistic.  There is no cure; we just have to manage it.  Waiting is sometimes a necessary evil; like waiting between scans to measure growth or decline in tumors and such.  Pure agony.  I don't generally sleep for the last week before the next scan, or before any tests that measure the progress of the disease.  It's terrifying to lie in bed and not be able to turn off your brain to the negativity that creeps in.  I get very down at times looking at the prospects for my future.  But then I remember all my supporters and family and it lifts me.  My friend Dean said once that I amazed him.  He said "Where others would wilt, you rise up."  Shout out to Dean.  Love you, buddy.

Chapter 07: Puff the Magic Page ...

Puff the Magic Page

 on 

Why People Shouldn't Smoke

Oh, how I loved the 70's and 80's...

There's been a lot of speculation on what caused my lung cancer (which caused my brain tumor, which caused my spinal cancer) or some other order.  Most are in agreement that the lungs are the origination point for all of the many varieties of cancer in my body, but what caused it?

The logical answer to that is in the answer to the question "do you or have you ever smoked?"  To which I had to answer "Yes." I started right after high school (class of 77) and smoked for somewhere around 10 years.  It wasn't a continual time line of smoking, because I quit a couple of times,  I tried the patch, the gum, and whatever else was available at the time.  It was hard, and I told myself that I needed these things for help in quitting.  I really just needed an eye opener.  I got that on April 18, 1985,

My parents moved to Florida (Bonita Springs) in the fall of 1984.  My dad had retired from ODOT earlier that year.  I took my first vacation to Florida the following April, and dad had lots of plans.  He had chartered a deep sea fishing trip for three, to include my sister who lived on Sanibel Island at the time.  We spent the first couple of nights just sitting around the house.  We went out to dinner the night before the fishing excursion.  For that morning, dad had set his alarm for 5 AM.  I went to bed, and the next thing I remember is my mom running in and saying "I can't wake him up!"  I jumped up out of bed and went into their room to see my dad lying there, eyes open but seeing nothing.  Just a blank, lifeless stare.  It was the worst day of my life.  My mom was crying hysterically, so I called 911, told them about dad.  I told them they could come in silent because I could see that he was not revive- able.  This is dredging up some strong negative memories, so I'm going to cut out a lot of the details and cut this short.  I then hung up and called my sisters.  Nan came over right away since she was in Sanibel.  Vicki was waiting to see what was necessary; we thought she could do more in Ohio to make arrangements for his services.  After he was cremated in Bonita, Mom, Nan, Tye (dalmation) and I started north.  My recollection is that we drove straight through, dad riding in the console of his favorite, brand new Chevy Suburban.  (side note - we had to put oil in it twice on that trip).

This isn't a blog dedicated to my family history by any stretch, but I felt that it was an important enough event in my life that I needed to mention it.  Dad smoked in his youth as well, quitting somewhere around the age of 30.  I was 26 when he passed (he was 56), and although the official cause of death was heart related, he had respiratory problems most of his adult life.  When I got back to work at ODOT I was sitting at my desk and had a bad chest pain.  I called my doctor and he said "get in here"; so he did and EKG and decided it was only a panic attack (that's like a huge understatement).  When I left the doctor's office I had a partial pack of cigarettes in my purse, and I tossed them into the dumpster.  I'll admit to a backslide when I was around 30, but again when I set my mind to it, I didn't need any assistance; just good old will power.

So the $64,000 question is did the decade or so that I smoked contribute to or cause my cancer?  I got a "probably" from one doctor, a "maybe" from another.  I also had a melanoma removed from my shin that required 26 stitches - that was somewhere around 2012.  Melanoma has been known to resurface after years of absence, but in my case they got clean margins on the first try and everyone seems pretty confident that the melanoma was not the cause of my lung cancer.  Several have told me that it could be  something environmental, could be the smoking and some say we may never know.  So I'm going to interpret that as:

IT WAS THE SMOKING

in the hopes of getting others to quit.  I have a couple of people I could call out specifically but I'm pretty sure they will know who I mean when they read this post.  So while I can't say for certain that the smoking caused my cancer, I choose to blame that nasty habit for my current state.

I will step down off of my soap box now and continue on with more important topics, like steak and wine, in my next posting.