Chapter 18: Prayers, Poems and Pies

Prayers

Hello, all.  Sorry I have been a bit remiss in this month in communicating, but it turns out there may have been a good reason for that.  I have several topics to discuss now, but this one has priority over all, including the Christmas holiday.  A co-worker (and I have her permission to share this) named Barbara is on the same roller coaster ride with her husband George as I was on in August 2016.  He has recently been diagnosed with a very aggressive cancer.  Summing up the state of things, Barbara wrote that they had a very positive experience at Florida Cancer Center, and that they were very proactive in their pursuit of the disease.  He is currently scheduled for surgery on Tuesday the 26th following a diagnosis on the 22nd.  They got an appointment the same day they called on the 22nd, which is amazing in and of itself.  They wanted to have a PET scan but given an OR was available Tuesday and they would be operating regardless of the results, they will do the PET scan after the surgery.  The scan will show if there is any matastasis.   I won't say more than that as it seems a bit personal even though she told me I could share.  The main point of sharing is so that all of you, as you are praying for all of your family and friends this holiday season and beyond, please include George Simons in your prayers.  I can attest to the power of prayer based on my own results.  I'm almost at the 1.25 year anniversary after an initial poor prognosis.  Pray for George, Barbara, the doctors, the surgeon, the facility,  etc.

Actually, while you're at it, if you could continue to mention my name in your prayers, I've had kind of a rough month suffering some extreme vertigo.  My cane isn't really sufficient to keep me stable anymore so I'm looking at walkers.  I hate to take that step because I'm afraid I won't come back from it, but it also seems prudent given if I fall my bones are terribly weak from the bone cancer and I am a big risk for broken bones/displaced parts.  Some think I should get a motorized scooter, but if I do that I know I won't get ANY exercise in my legs and they will atrophy.

A Poem for InfoTech

'Twas the night before Christmas and all through "The Pointe"

No people were found in the InfoTech joint!

The building was locked up as tight as a drum

So peeps could stay home and wait for Santa to come.

The parties were clearly defined by the leads

With requirements defined by the development teams.

The services team was asked how they felt.

Some said "let's do First Mag" for a belt.

Consulting was asked if they would opine

They replied "Yes, but we'll need more time"

Agreement was finally reached by all

Next year we'll start early in the fall!

Lessons behind us, the future looks cool.

Next year I'm winning that football pool.

Jeff Bakes a Pie

What's your definition of eccentric?  Would it be accurate to say that baking pies in a hotel room with a kitchenette because someone asked you to, would that be considered eccentric?  Or is that just plain crazy?  Well, it's neither.  It's typical behavior of my friend Jeff Hisem from Ohio.  We worked together at ODOT for 23 years. He was my boss, but more my friend than a manager.

Jeff was down here in Gainesville at Info Tech for the Decision Support Summit at the beginning of December, 2017 along with about 50 other folks from various transportation agencies across the country and Canada.  Their flight arrived on Sunday late afternoon, and his traveling companions with whom he was sharing a rental car dropped him at our house.  Janet and Justin made a point of saying hello to me before dropping him off, which I really appreciate.  Very caring people, for sure.  There was another ODOTer here for the summit  (Tim) but he had other transportation.  I had not been feeling all that great that weekend and so it was a pretty short visit, but it was wonderful to be able to sit in the sun, have a beer and talk to Jeff.  Actually, listen to him would be more accurate (tee hee).

Monday was the summit opening, and I really wanted to go but I had a doctor appointment and wasn't feeling at all well.  So I didn't make it in that day.  Probably best I didn't because I understand it was sardine city in that area!  Shout out to Shanna for being able to orchestrate breaks, lunches, etc.  She's a wonder, for sure.  A lot of people put maximum effort into making this event a success, and from what I've heard it was for sure.

On Tuesday, I went in to the building to see some of the people that I've known for years from DOTs and AASHTO.  So many good friends and all available at the same time. It happened that I arrived as they were in the middle of the break and I was able to talk to a bunch of people.  When the summit resumed, Jeff led me in to the first room and I sat in a chair along the wall for about 5 minutes.  It was crowded in the room, so I excused myself and Jeff escorted me out.  We went into the other room, and I had what I can only describe as a panic attack being at the front of the room with so many people.   I didn't realize until that day how much my confidence has been affected by my disease.  Before I was sick, I was noted for giving good presentations,  leading meetings, mentoring and managing people.  Now I was a bowl of jello, shaking and nervous because of the crowd.  Jeff saw I was in distress, took me by the arm and led me from the room.  I texted Connie and she came to pick me up at the front door.  That was the weirdest thing that has happened to me in terms of psychological impacts of my illness.  I guess I'm going to have to work at getting my self confidence back.  I know I can do my job, but I'm happy to not be closely involved with the clients right now.  I'm hoping eventually to get back to that, but it seems a long way off.  This is by far the slowest healing process I've ever had to endure!!

 So, I've gotten off track. This is supposed to be about pies.  Evidently, at the first part of the summit, someone questioned Jeff's ability to bake pies.  Given they were staying at a hotel that had a full kitchenette, he picked up the gauntlet.

All he asked from me is to borrow a few items.  Pie plate, french roller, pastry cutter, measuring cups, measuring spoons, spatula, bowls, salt, cinnamon, aluminium foil; he bought the rest of what he needed and made the pies in his kitchenette at the Marriott Residence Inn.  Monelle also supplied him with a pie plate (Maybe other things but I'm not aware).

One of the pies he made was egg free, because Janet (from Ohio) has so many food allergies and one of them is eggs.  He saved two pieces for Connie and me, and I'll tell you what; I don't know if I've ever had a better egg free pie (or if I've ever even had an egg free pie)!

It was delicious.  He came by, picked up the stuff.  I was in my jammies but still came out to talk to him.  He was very apologetic, but I was like "Jeff, you're just being you and I love that."

So, the pies were a huge success.  He returned the items on Wednesday evening; same deal I was not well and in bed most of the day but got up to see him.  He is one of the best friends I have ever had, and I would have been devastated if I hadn't been able to see him.  It was a precious memory being made with the pies, etc.  Oh, not to mention the home made peanut brittle and caramels he brought us.  Yowza!

Happy Holidays, everyone.  I hope you have a wonderful season with your families.

Chapter 17: Anna One, Anna Two, Anna three

 Anna One, Anna Two, Anna Three

If you don't understand the above picture, congratulations.  You're young.  If you do understand, then you also know about things like warming up the television, changing directions on the antenna from north to south (or points in between) so that you could get a completely different set of channels. And mind you, a "set" of channels might be as many as two!  There were lots more options on the AM radio.  I used to listen to CKLW out of Detroit.  They played music that my mom hated, like the Stones, Beatles, Eric Carmen and the Raspberries; "hard rock" stuff like that!  

Anyway, let's get back on track.  Anna one - my first cyberknife to try to rectify my lingering and excruciating back pain.  There were originally 3 treatments scheduled, starting on Wednesday, November 8.  A last minute conflict arose and they rescheduled to Thursday the 9th.  This was the longest of the appointments with my time "on the table" reaching close to an hour and my actual scan minutes were somewhere under 50. An interminable amount of time when you can't move, scratch your nose, itch your whatever, stuff you do all the time.  My hands were "hobbled" so that I would have to keep them to my side.  Good that I take anxiety meds!  After the treatment was over, I felt fine with no lingering affects.  I went home and rested the rest of the day.

Anna two - Cyberknife treatment #2 occurred on Friday, November 10.  Pretty much a carbon copy of the Thursday treatment only this time I came out with a really sore neck.  The first day they gave me an extra rolled up towel to help cushion my head.  I didn't realize how much that helped until this treatment was over.  The back of my neck around the base of my skull had been lying directly on the hard plastic which ended up bruising me.  I was okay after resting again for the rest of the day.  Cyberknife, if I know nothing else about it, I can attest to the fact that it really contributes to already heavy fatigue.  My meds also make me very tired.  I'm not taking daily naps anymore, but do feel the need to lie down and rest my back a couple of times a day.

Anna three - The third and  final treatment occurred on Monday, November 13.  I remembered to ask for a cushion or pillow and they brought me a nice piece of foam on which to rest the back of my head.  All turned out well, with no repeat of the neck pain from the second treatment.  It is too soon to tell if the cyberknife treatments will impact my chronic back pain.  The doctor said it can take 2-4 weeks before the full value of the treatments are realized.  If there's no relief, then I have another alternative to explore which I will write about when the time comes (if it comes).  I don't want to jinx my treatment by discussing "what if" scenarios!

Chapter 16: Twas the Night Before....

Twas the night before CyberKnife

And all through my brain

I kept thinking to  myself

"Hope that's not another train."

I hope you all are ready to continue reading, because I have a need to write!

Early last week, I had yet another CT scan; this one specific to my upcoming cyberknife treatments.  The radiology oncologist, Dr. W, said that this particular machine can take tighter slices and makes it easier to pinpoint the areas in need of treatment.   She asked me to not take my pain pill before I came in for that scan; that's a tough order for me because I pretty much am non-ambulatory until I get some pain meds in me for the day.  But I did it because I want to get the most out of this process as is possible.

When I got in the room with the CT machine, they helped me get up on the table, and then she started poking me in the back telling me to let her know when she "hit the spot" where the pain was the worst.  Well, you may have heard me holler wherever you are when she hit it.  She then preceded to mark up my back with little sticky arrows to make sure she could see the area in the CT results, before finally loading me into "the tube" and taking the scan.  I was crying by the time I left there.  I had a pain pill in my pocket and took it as soon as I was out of the room (with her blessing).  

I've tried to go without pain meds a few times, but it's ludicrous.  I'm not addicted to them, but i definitely rely on the relief I get from them.  I'm keenly aware of the big opioid problem in our country, and sometimes have to justify my use of them to friends and family.  The doctors both explain it like this:  If you have pain in your body, then your nerves will send out pain receptors.  If you have the pain receptors present in your body, that's where the drugs focus their attention.  It is when you take the drugs and you don't have those pain receptors active in your body, then the drug focuses on your pleasure receptors.  That's what causes the addiction.  Sometimes I am overly careful about not taking the meds because I fear all the bad press and have had fear of addiction, but my doctors and main support team stress to me that it is important to stay ahead of the pain.  If I wait until I'm fully engulfed in pain, then I have to spend a couple of days in bed.  If I take a pill once a day or once every 2 days, or 2 a day or whatever I need, my life is much more comfortable.  And yes, I've tried non-opioid pain meds but I end up taking 3 times as many and don't get the same relief.  

My immuno and anti-seizure meds tend to make me very tired.  I've been trying to walk more and more each day (cane assisted) and have gone out with the family to shop and whatever, frequently sitting in the car while mom and Connie go in.  I just need to get out of the house.  I'm also no longer in need of a daily nap (although one might argue that my bedtime is actually most people's nap time).  I'm a big sleeper now, and relish going to bed at a painfully early hour.

The hope is, when my cyberknife treatments are done and it has a chance to work (which sometimes can take a week or two before the full benefit is realized), then I'll be able to come back to work.   I don't anticipate being able to work full days sitting at a desk

Note: Treatment scheduled shifted by one day.  Starting tomorrow (Thursday November 9) instead of Wednesday, the 10th).  Just means I'll have to carry the sessions into next week to complete the full course  of 3-5 treatments.

Chapter 15 Scans for the Ages

From RadiologyInfo.org for patients.

"PET/CTScans

Positron emission tomography with computed tomography (PET/CT) uses small amounts of radioactive materials called radiotracers, a special camera and a computer to help evaluate your organ and tissue functions. By identifying body changes at the cellular level, PET may detect the early onset of disease before it is evident on other imaging tests"

"MRI Scans

Magnetic resonance imaging (MRI) uses a large magnet and radio waves to look at organs and structures inside your body. Health care professionals use MRI scans to diagnose a variety of conditions, from torn ligaments to tumors. MRIs are very useful for examining the brain and spinal cord."

During the scan, you lie on a table that slides inside a tunnel-shaped machine. Doing the scan can take a long time, and you must stay still. The scan is painless. The MRI machine makes a lot of noise. The technician may offer you earplugs."

October should be renamed to Scantober as far as I'm concerned.  Between the last week of September and the first two weeks of October, I had an MRI on my spine, another on my pelvis, another on my sacrum and finally one on my brain.  Additionally, I had a PET/CT scan so that we would be sure we had the full picture before determining how to proceed.  I spent as much time lying on my back in a tube during this time as I did in my crib as a baby; or at least it seems that way!

The results were, well, pretty much miraculous.  All the tests came back with no signs of any living cancer cells anywhere.  I'll pause so ya'll can let that sink in.  Zero living cancer cells.  It doesn't mean I'm cured, as there currently is no such thing as a cure for my kind of cancer.  It just means the meds in my clinical trial have addressed the cancer exactly as the doctors had hoped when they were fighting so much with my insurance company to get me enrolled in that. I'm buying time and quality of life by participating in the Alecensa trial.  The drug has outperformed all expectations; they had hoped to slow the growth of the cancer but I don't think anyone anticipated a result as dynamic as this one.  

So, what does this mean?  Well, it means I can continue to live a relatively normal life.  I still tire very easily, which is a side effect of the meds,  and my back pain is very severe.  I walk with a cane, but at least I can walk.  Dr. W will see if she can do any additional cyberknife to alleviate that pain.  If so, wonderful; if not, still wonderful.  

We will do routine scans to monitor the beast that is hiding inside of me, and maintain the current dosage of the medicine as long as it remains effective. 

I guess I could chalk this up to the miraculous nature of clinical studies or the power of modern medicine.  I've been fighting the battle for nearly 13th months after initially being given a 6 months prognosis.  I'm not giving science all the credit for that.  I'm listing the human factor as the biggest contributor to my good fortune.  My support group has been amazing and includes too many people for me to list here.

I want to give a special shout out to Connie, who is my rock and pillar of support.  If it wasn't for her, I would have never been able to fight as hard as I have.

My family has been amazing as has hers.  I believe in the power of prayer now more than ever. My mom basically left her life in Ohio to come and help me get better.  

When I say my family, that especially includes the big family at InfoTech.  They are the best company in the world.

Old classmates and co-workers from ODOT have been following my blog and keeping in touch with their wishes and prayers.

I need to pay tribute to a good friend/family member who passed away unexpectedly on October 13; Robert Peter Lee (Robby).  Robby was a pillar in the community of the small town in Ohio where I grew up.  I can't help thinking that Robby might have pulled some strings with "the man" for me.

Thank you all for your support, prayers and well wishes.  I feel so blessed and extremely lucky to have such an extensive family to support me.  God bless you all.

RIP, Robby.

Chapter 14 Cyber Knife 

If it looks like the man in the picture is being tortured, well, basically he is.  The machine above is used in a procedure called Cyber Knife, which paraphrasing this very loosely is a method of pinpointing specific spots for radiation, thereby sparing the body any excess toxicity that is caused by whole area radiation (like whole brain, for example).

As you know I had whole brain radiation early in this journey, and it, along with the surgery that removed the large tumor in the middle of my head, was successful in reducing the lesions in my brain and spine.  A few months after, late in 2016 when we decided the current chemotherapy wasn't working, it was decided in addition to switching medications to perform cyber knife in order to clean up more of the small lesions in my brain.  I also asked if they could radiate my neck area, because it still had severe pain and as far as I knew that area had not been targeted before.

So, first a little bit about the machine itself.  If you've ever seen a car assembly line or maybe some other assembly line where they do computer targeted pinpoint welding, it's very likely they are using something similar to what is shown above.  Of course on a car the weld spots are always in the same place for a given model, so programming every time is not necessary (although I would assume they routinely calibrate the welding robots).  Cyber knife actually uses the same foundation and engine for the machine with just a few minor differences; and then of course this isn't really anything like welding!!

To do the job properly takes some arduous measuring, marking, recording, re-recording, etc.  All of this time I'm on the table where the machine is and there are 3 or 4 people around (including a physicist) making sure the mapping is done properly.  The mapping took 3 times as long as the actual sessions.  My head is immobilized by one of those masks I talked about earlier, only this one seems a little tighter.  This is the closest I ever came during a medical procedure to having a full blown panic attack, and this was only the mapping!! They prescribed me some happy pills to help me get through the actual sessions.

I think there were half a dozen or so cyber knife sessions.  After each session, they would release the mask and put a pillow under my neck so that my head was tilted back.  Like I could look into the tube and see the back wall, but I was lying on my back.  This position was extremely uncomfortable and I had to hold like that for what seemed like an eternity. While I was in this position, they did full dose radiation on the vertebrae in my neck (cervical spine).

Of the two procedures, the set up of the cyber knife machine was brutal; but result-wise, the full dose radiation to my cervical spine left me unable to swallow or talk because my uvula was badly burned (uvula is the hangy downy thingie in the back of your throat).  It was during the last week of 2016 and early 2017 where I lost the bulk of my weight mostly because I couldn't swallow anything.

Meanwhile, back on the chemo front, we switched to a medicine call Xalkori which seemed to work for a while, but eventually I had to switch off of that because of scan results not showing any improvements to my brain.  The doctors huddled and researched to come up with a clinical trial that would meet all of our needs; basically doing what Xalkori did but then having a larger impact on my central nervous system.

They located what they hoped would be the perfect immunotherapy study using a new drug called Alecensa.  Of course, my insurance company denied it because of cost ($23,000 a month), and recommended a different, closely related drug.  The doctor argued until he was blue in the face, but the end results is that I had to try the Xykada first.  Well, on the second day, Connie and mom thought I was having a stroke because I was talking all sorts of nonsense.  It was weird because I knew what I wanted to say but the words that came out of my mouth didn't match what was in my brain.  I tried texting, too, but what I saw on the screen was no where close to what I thought it was.  The next day, we called the clinic and the doctor reduced the dosage (this was a Friday).  On Monday, the clinic called and said "PRAISE THE LORD! Your insurance granted your participation in the trial."  My doctor had called the drug company rep and explained how I was the perfect candidate for this particular study.  He had a peer-to-peer with the drug company doctor, after which the drug company offered me co-pay assistance which made my insurance company concurrence automatic.  (It's all about the almighty dollar).  So now I am happily entrenched on Alecensa and hoping for good news with the next set of scans which take place during the month of October 2017.  I know I feel better and am hopeful that these scans will show that isn't a coincidence; I would like to see some real progress.

There's a lot of waiting involved in Cancer.  You can't go to the doctor and say "how am I doing?" because it isn't something a doctor can see in a patient's eyes or hear in their heart beat.  They can check for physical abnormalities but following cancer's progress involves lots of blood work, MRI's, CT scans, CT PET scans, radiology, etc.  All of these things have to be executed and reviewed by qualified medical folks.  So if anyone asks me how I'm doing, I guess I don't really know.  I feel better, I still have memory issues, I've got hearing loss in one ear, and my hair is now a wild blonde fro.  I get tired very easily.  My blood work has been good except for the white blood count which is perpetually low.  White blood cells are the cells that assist in warding off colds, flu, viruses, etc.  So I'm careful where I go and who I allow at the house.  My friends all respect that and don't come over if they have a cold, never bring their kids, etc.  I also go bed somewhere around 7 PM; sometimes even earlier; because I've shot my wad for the whole day in just a few active hours.  I'm being careful to keep moving every day so that my legs don't give up on me.  Some days I can walk to the end of the driveway and back, other days only to the garage door.

One last word on the worth of clinical trials; I've heard people who strongly disagree with clinical trials, viewing them as a pool of human guinea pigs each waiting to have some injection or infusion that might lead to the growth of a third arm or a nose in the back of your head,  The naysayers are vocal saying that the facts were not explained to them about the risks.  Well, I mean to tell you if you read all the documentation they give you on a trial, then you'll be as informed as you need to be.  Most people don't read it all; but I did and know exactly what "could" happen.

For this guinea pig, who doesn't stand a snow ball's chance in hell at survival using traditional chemotherapy/radiation options, I'm happy, actually proud to be part of a study that may one day lead to a long list of cancer survivors.  If I'm not in that group, then I am still happy that I had the opportunity to let my illness lend a hand in the fight for the cure.  If I am in that group, then that's great too.  Although I'm not terribly fond of the nose growing out of the back of my head.


Shout out to the Upper Sandusky High School Class of 1977.  Sorry I missed the 40th reunion.  Hopefully I'll be able to make the next one.

Chapter 13: Snail Mail & Blogs

Chapter 13: Snail Mail & Blogs

I know you InfoTechers will be astounded by this, so I'll  speak the words v-e-w-y, v-e-w-y s-l-o-w-l-y.


There are people in this life that DON'T own a computer.  Most of these people also do not own a cell phone and those that fall in between own something that isn't smart but is very gymnastic (i.e., it can do a flip).  They still rely on land lines and the US Postal Service. So, I want to give a shout out to my favorite snail mail followers.
                   

Meet Ed and Betty.  I'm not going to put their full names into into this blog, because invariably it will invite some nefarious actions from unscrupulous people.  In other words, someone may try to scam them.

I've known Ed and Betty for many, many years.  They are grandparents to some of my best friends and great grandparents to even more.  When Connie and I flew north for the wedding in May, they sat in the pew in front of us.  They are just a darling couple in their mid 90's.

Later at the reception,  we were seated at the same table as Ed.  Betty wasn't able to make the trip to the reception, which was kind of in a barn in the middle of nowhere.  Ed made a specific point to get up from his seat and come over so that he and I could chat.  He was very interested in my condition and kept telling me they would pray for me.  I committed to sending him paper versions of my blog posts and any random pictures I would run across (I have like a bajillion digital pictures and a 4x6 photo printer that works pretty darn good).

Well, sometime last week Connie got a phone call from her niece who was visiting her grandparents Ed and Betty, and also had her kids along.  Ed asked to speak to me, and I was flabbergasted at what he said.  He apologized to ME for not doing a better job of communicating.  This loving man who is in his golden years, not terribly mobile but still moving around was apologizing for lack of communication.  He told me that I was very good with words, and he knew the words and their meanings, but didn't have the ability to put them together the way I could.  I thanked him but told him any communication I got from them I cherished.  I told him that I had not been very expedient in posting during the month of July because it frankly was not a good month, and I had suffered a lot of pain and discomfort and anxiety during the month.  He said he was afraid that may have been the issue.

When the phone call was nearly concluded he asked if they could sing a song for me and I said "absolutely" and put my phone on speaker.  I couldn't figure out how to record the audio, but there are versions of these songs being sung by them at many weddings.  The lyrics are:

May God's grace go before you

May His love enfold you

May His mighty arms uphold you, protect you

Til we meet again, go with God

70th Wedding Anniversary Photo

And the final tune was:

May God bless you with His love

Always fill you with His love 

May He hold you in the hollow of His hand

For the Lord is with you in goodness and love 

May His light shine out in your heart

I hope this encourages someone out there to "pay it forward".  Do something nice for someone, maybe someone you don't know or do something anonymously for someone that you do know that has a need.  Meanwhile, you can thank Ed and Betty for the blog post.  They are very inspirational.

Chapter 12 Meds and Side Effects

It's inevitable.  If you take certain classes of drugs for pain medicine, a lot of very odd things happen to your body.  I started this chapter thinking I was going to describe in detail the effects, but quickly realized many of these would not be appropriate for my family-based blog.  Instead, I've decided to play a word-association game in this post, where I will imply what the undesirable side effect is and invite you all to imagine it, realizing some of you may have context and really "get it", whereas others are lucky enough to have not experienced anything like it.

So here we go.

A. Constipation:  Also referred to as "Stuck in the middle with poo."  A very painful condition where your digestive track pretty much turns to concrete.  Can last several days.

B. Diarrhea:  Also referred to as "the breaking of the damn" whereby condition A is alleviated by condition B.  This is a cyclical series of events where one just repeats A, then B, then back to A and B, etc.

C. Incontinence (pronounced in continents).  Unbelievably, this has hardly anything to do with traveling the continent of Europe, staying in youth hostels and hiking around the Swiss country side.

D.  Bertie Go (actually spelled Vertigo but I'm positive this is they're saying) Bertie Go).  I wasn't really sure about this one, but it seems to be related to someone named Bertie who can't tell down from up and falls down a lot, possibly due to extreme dizziness.

E.  Partial hearing loss from whole brain radiation.  (Might explain Item - D Bertie Go).

F.  Extreme fatigue - Sorry.  I fell asleep while writing this.

G. Cold symptoms - stuffy nose, congestion, etc.  If you have allergies you pretty much endure this all the time.  I was on allergy shots before all this happened and had to stop.  So I'm getting this one doubly bad.

H. Back pain - if you've been reading this whole blog, you're likely aware that back pain is where the journey began.

I.  Broken bones - that's right, some of these meds cause bone weakness that makes it a lot easier for a patient to bruise or break a bone.  Couple that with the fact that I have bone damage from the cancer, particularly in my spine, and you'll know why I walk with a cane.  I can't afford to fall down go boom!

J.  Numbness/tingling legs.  This one has caused me to sit on the edge of the bed at night and rub my legs.  I don't think there is anything about numbness that is comfortable, as Pink Floyd would have you believe.

K.  Inability to make strong decisions.  I don't think I've suffered from this particular side effect, but I may have at certain times.  I couldn't really decide whether to even mention it in this posting.  I asked Connie and Mom and both said it was my decision to make, and I agree with that; so I flipped a coin.  Heads for yes, post it; tails for skip it.  It was tails so I went for best of 3 flips.  Tails prevailed again but to ensure I'd considered all aspects of the decision before making it, I drew straws, played some mumbly peg and in the end threw a dart at a paper on the wall that had the words "Post" and "Don't Post" on opposite sides.  It came up post so here it is.  Of course I can't decide what to say about it so I'm just going to let you all figure it out for yourself. Be decisive.  That's my advice; I think.

L. Blurred vision - I hope Robin Thicke and Pharell don't read this; or Marvin Gaye for that matter.

M. Insomnia - this is quite possibly the bane of my existence.  If I can't sleep, I can't function the next day.  If I take too many sleep aids, I can't wake up all the way the next day.  So between the fatigue and the insomnia, it's a tough row to hoe.  I had an employee in Ohio who asked me once "what's a rode-a-ho?"

Sometimes these can happen more than one at a time, and if it does it is very difficult to deal with.  Especially if it involves any part of the digestive tract.  Planning is essential in these times as you can't ever tell when a situation might become urgent, if you know what I mean...  All in all I find it better to stay close to home as much as possible.

There are many other potential side effects.  These are only the most common.

In my next post, I'll be talking about the cyber-knife experience from December of 2016.  I'm catching up to real time, slowly but surely.  If I had started blogging from the beginning, I think I'd be current, but at that time it just seemed too daunting of a task and I wasn't comfortable sharing a lot of this information.  Now, as intended, I'm finding it helps me keep a good attitude, and also like the fact that I may be helping other people struggling with this (or any) disease to cope and see the good side whenever possible.  Please feel free to share the link with anyone you think might benefit from the content.

Take Care,

JenMc

Chapter 11 - Happy Seizureversary to Me!

Yesterday, August 8, 2017 was a very important holiday.  It was my first Seizureversary.  It was also my sister's 60th birthday. (Happy Birthday, Nanny Goat).  AND, it was  

NATIONAL SNEAK SOME ZUCCHINI INTO YOUR NEIGHBOR’S PORCH DAY

Sorry I didn't give you a heads up so you could do your zuchinni Sneaking, but it just got by me.  

Please note in September, we need to be aware that the 22nd, in addition to being the beginning of Fall, more importantly it is Elephant Appreciation Day.  Be nice to elephants.... They won't forget it.

Chapter 10 Breaking News

Well, it was an adventurous July of 2017.  I know I'm not to that point in my story, but as I decided earlier if something happened that I couldn't wait to tell you all, then I'd use a "breaking news" format to leap ahead to today, then the next posts I'll revert to the timeline I was following, which I believe is the last quarter or so of 2016.

One of the hardest parts of writing a blog is keeping track of what I've already told you and trying not to repeat content.  Sometimes it is necessary to give context to these breaking news formatted posts.  Ideally, if I had been up to writing the blog from the beginning of the story last August 2016, then it would have been much easier if I had told it as I went along.  But I was not in the frame of mind and didn't think I could really talk about it at the time; nor did I think I would ever want to publicly discuss my disease.  I realized after meeting many, many other cancer patients that I could have an impact on them and their friends and families; in a very positive way by bucking up and pretending to be brave.  That's right; this is all an act.  I'll tell you the truth now; I've been scared a lot; I've been depressed a lot; I worry frequently, and I cry quite a bit.  The only thing I actually like about this phase of my life is I finally have curly hair!

So, here's the "news scoop"; I had a full body PET scan toward the end of June.  It showed a lot of what I'd like to refer to as remission; most of the lungs were cleared up, as well as the lymph nodes, a lesion in my liver, and bones in my back as well.  These were taken care of by the immunotherapy drug called Xalkori which I had been on for I think 6 months.  I think I was ecstatic at the time, and I may have referred to this result somewhere in this blog.  On June 28, 2017 we did an MRI on my brain and read the results on the 29th.  My radiology oncologist, Dr. W, came into the room with a not very happy face.  I said "is it bad?" and she said "it's not good".  The first full-brain radiation in Oct./Nov of '16 had done a  good job erasing lots of the original growths.  Unfortunately, it didn't stop the creation of new growths; they were popping up in exponential fashion; very tiny, some less than a millimeter but still dangerous.  So the two docs came up with a new plan.  They needed to find a new med that had more  promising results penetrating to my brain.  They found the perfect drug, which should have garnered an easy approval from my insurance company.  But as usual, they balked.  They said I needed to try a similar drug first, even though Dr. P assured them he thought I was a perfect candidate for this study.  The situation is they need candidates for the study who have the exact type of cancer and mutations, etc. that I have.  No other candidates except those who are like me will do.  They're trying to get a fast FDA approval but they need to expedite the the study.  The copay on the Alecensa is really high, like $23,500 per month.  But the drug companies in cases like this are sometimes willing to offer assistance with the bill since they're trying to expedite approval.

Long story short;  I took the other, cheaper drug Zykadia at the insistence of my insurance plan.  I took it for only 3 days,  5  caps in the morning every day. I only took it for 3 days since that's how long I could tolerate it .  Friday afternoon I started talking and not making any sense.  I was afraid I was having a stroke.  Connie called the Doctor's office and asked what we should do and they said "discontinue immediately.  We'll submit it as a fail and try to get approval for the Alecansa again."  It was Friday, so I had 2 days without treatment; they called on Monday and said "the insurance wants you to try a reduced dosage first."  Five days later, same result.  Yesterday the Doctor's office called and said "We have great news for you!  You've been approved for the study that we were trying for all month!"

The meds arrived this morning by UPS from a Specialty pharmacy.  I take 4 tablets 2 times daily and I really hope they live up to our expectations.  I have a pretty good feeling about it.

If anything else changes that I need to report outside of the timeline, I'll do another breaking news post.

Look for some humor in my next post; just because it's been a while!

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.