Chapter 09 Chemo Chameleon

Chemo, Karma  

          Chemo, Karma

Chemo Chameleon

                                       I apologize for the length of time between posts.  A lot has happened that kind of dulled my desire to write, but I think it is back now and will be explained in future posts.

                                       Once I graduated from my radiation program and the 3 wise women completed their nomadic journey to Bern's and the Moffitt Center, I saw Dr. P again to discuss the treatment approach. The doctors' recommendations here in Gainesville were validated by the doctors at the Moffitt Center. I was still very tired and had an extremely low white count, verified each week by blood work.

The chemotherapy itself started a week later.  In the interim, a chemo port was installed in my chest.

                                               They inserted the port under my skin on the upper right side of my chest, and attached a tube into a major vein near my heart.  They then affixed it with surgical tape.   It should be noted that many people are very allergic to the tape used, and it can result in a pretty bad blistery rash.  The only evidence of its existence is a small bump at the port site, and you can see what looks like a tunnel from the port toward my heart running into the vein.  When I touch the middle of the port, it reminds me of one of those replaceable squeakers you get out of an eviscerated dog toy.  Of course, if the squeaker is ripped out, there's very little chance the toy can be salvaged.  

He's Dead, Jim

                                      About a week after the port has been inserted, then the chemo actually starts.  The chemo process itself can take on many forms.  The first form I'll refer to as "traditional chemo";  most people think all chemo is delivered in this form.  It involves sitting in an infusion room with a fancy recliner hooked up to a drug line that delivers the chemo cocktail via the port over a span of 4-6 hours.  It can be delivered via a regular IV, but if you choose to do that rather than a port your veins will eventually have so much damage and become unusable for future blood work and delivery of other drugs.                                                                                                                                                                                                       The first of the chemo cocktails was not the treatment of choice from my doctor; he had identified an oral medication in the immunotherapy universe that he thought my profile fit the criteria perfectly.  My insurance didn't agree; I think this was my indoctrination into the world of medicine versus the world of insurance.  I don't want to skip ahead on the time line of this blog, but I think to illustrate how asinine the whole system is, I will cite a few actual denials/approvals that occurred within the last 11 months.                                                                                                                                                             

                         First off, the case in point; my first encounter with the contest between good versus evil.  My oncologist recommended a clinical trial to which the Moffitt Center had concurred (see chapter 8 for detail). My insurance company balked at the cost and recommended the regular chemotherapy.  They said for me to be eligible for the study, my case had to demonstrate that the chemo had failed.  So essentially, they wanted me to go through a round of treatment that my Doctor said would not work.  He fought and fought, but the study required patients who had experienced a chemo failure.  The problem with that is there are hundreds of other immunotherapy and chemotherapy clinical trials that require a patient who is "chemo naive"   Essentially, by bowing to the ruling of my insurance company, I eliminated a lot of potential treatments (although my doctor was not in favor of any of those). It felt like I was tossing in half my hand in a poker game and trying to win with 3 cards against a bunch of 5 card hands.  In the end, I made the decision to go with the chemo route because it was the only way I would  get into the "right" treatment my doctor had identified.  It took somewhere around half a dozen treatments to determine that the chemo wasn't working.  (Told you so, told you so). 

                   After a patient has chemo through their port or IV line or even oral, there is usually an injection needed 24 hours later to stimulate bone growth.   The drug companies created the Neulasta injector that gets affixed to your arm or stomach, then a timer starts and 24 hours later the injector fires.  If you are on an oral med, every week they test your blood and if your white count is low (which it always is...) then they just give you an injection of Neupagen, which is the same drug the Neulasta injector delivers.  About 12 hours later, hold on to your hat, because you'll get hit with what I swear is the worst pain to date over your entire body.  It's the bone growth drug that causes the pain.  It's like your bones being on fire.  I was asleep on that morning and Connie was out doing yard work.  I screamed out in pain and stumbled to the back door.  She was right there and came running immediately, got me back in bed, shouting in pain and called the Cancer Center to see what could be done.  When she explained that I had gotten a Neulasta injection the previous day, they asked "did she take a Claritin and Aleve before the infusion?"  Duh.  Would have been good to know that prior to the procedure.  Well, we were obviously past the Claritin/Aleve stage of pain relief so I took the heaviest duty pain med that I had and slept the rest of the day.  Future Neupagen injections, either through the Neulasta injector or straight into my arm, I always took a Claritin/Aleve (or Advil).  I still had the bone pain but it was tolerable.  The doctor quit giving it to me because it was having little impact on my white count.  I now get an Xgeva injection once a month.  I can tell when it is time for that shot because it makes me feel good for 2 days, terrible for about 14 days, a little better but not "good" for 10 days, then really good for 3-4 days after which I get another injection and ride the ride again.

                Back to the timeline.  So it was somewhere around Thanksgiving 2016 that Dr. P decided to pull the plug on the chemotherapy and switch to another approach.  That approach involved an immunotherapy drug, taken twice daily.  It is an oral medication so no need to engage the port.  I still had to have it flushed every couple of weeks, and I received fluids through the port a few times.  So the port remained but was not used often.  It doesn't really bother me, except when one of my dogs jumps on it (ouch!)  Evidently they think they should be able to make me squeak.    

             Dr. P made the decision that the chemo needed to be changed based on PET and CT scans.  Across the building in radiology Dr. W was working on a strategy to take care of the METs in my brain that remained after the initial radiation.  I'll expand on that in a future post.

              

       Fast forward to July 2017.   You've already read about the success from my PET scan results in June.  I published that before I saw the MRI results of my brain which occurred on June 28  (MRI) and 29th (results).  My other doctor, in the radiology oncology specialty, came in to the room and said "it isn't good".  Essentially, the seizure was caused by a pretty big brain tumor, but there were literally 100's of others; some teeny, others  measurable.  The whole brain radiation resulted in progress in shrinking many of these, but the MRI in June showed some additional spots, significant growth in the number of tumors. The two doctors put their heads together and came up with a plan, a new and innovative immunotherapy treatment that they believed could break through to my brain.  It's clear the existing immuno drug I'm taking isn't able to do that (peek at the future of this blog right there).  So as of July 2017, my lungs look good, my organs look good, my bones look good although there are some bone loss issues that probably will prevent me from returning to some of my pre-cancer activities.  And I was just getting ready to go for my LPGA card, too!  

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.

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.  

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