If you have nothing nice to say....well....And an update...

When you find out you have cancer you begin an amazing journey and learn things you just shouldn’t have to learn.  You learn way too much about the medical profession, its drawback and limitations.  You become an insurance expert and constantly balance the need for treatment against insurance that wants to pay as little as possible.  You become part psychologist as you try your darndest to understand the motivation of some well-meaning folks around you. 

You will have things said to you that are not meant to be hurtful or cruel, but because of your damaged state, can really have an impact on you.  People that are well, or have not had cancer, really don’t understand what is going on inside the mind of a cancer patient.  I certainly didn’t, and have probably said some really stupid stuff to folks that were suffering.  So I’ve listed the 10 worst things that have been said to me, they are in no particular order and I really believe that the person’s saying them didn’t mean anything bad, it is just a well person and a cancer person speaking different languages to each other.

·         “You’ll be fine.”  This one really irks me, you have no idea what I’ll be, how long my life may be, what the “quality” of life may be, hell my doctor doesn’t even know.

·         “My uncle died from that.”  Oh thanks for that one…..moron.

·         “Are you ready to meet your maker?”  This one really took me by surprise.  No questions about prognosis or how am I doing, nope, this one was first out of the chute when I told this person what was going on.

·         “Wow…cancer huh?  I once had a really sore neck that took quite a while to heal, but I'm fine now.”  I never thought in talking to folks there would be competing diagnoses.  If it is a competition though, I’m pretty sure the C word trumps anything that is sore.

·         “Well, we all have to die of something.”  Let me say that to you while someone puts a gun to your head and see how you feel about it. 

·         “I have this supplement you can buy and it cures cancer.”  No kidding…cures cancer ay?  I know chemo can cure cancer and it has been used millions of times.  Will you bet your life on some supplement or on methods that have been shown to work?

·         “Keep a positive attitude and you will beat this.”  Wow, let’s blame the victim here.  So if I die, I guess it is because of my attitude?  My individual cells have attitude barometers that will judge either for or against my life.  The only thing a positive attitude does for certain is make those around you feel better about your plight.  That can be a good thing, but it doesn’t cure cancer.

·         “If you were in tune with your body you would have caught it earlier.”  This was a jump out of my skin moment.  I was stage 3 with cancer all over my upper body and never felt a thing.  I rode my mountain bike over 1200 miles the summer before my diagnosis and was in some of the best shape of my life.  This is the fallacy of all the wholistic crap floating around.  This morning I spoke with my oncology nurse and we specifically discussed diet etc.  She has plenty of patients that shop at whole foods, are vegans, are on paleo and those who eat bad.  Cancer is a crap shoot, no amount of cross fit or meditation will keep it away from you.  Yea I probably sound a bit bitter, but I tried to take care of myself and look what happenned.  

·         “Holy crap how many chemo treatments?  What stage are you?”  This one just stands on its own.

·         “Did you get lazy while on chemo?”  ARGGGGGHHHH!!!!  If I had enough energy I’d reach out and pop you right in the kisser, but I’m too tired to even think so I’m gonna take a nap.

The real difference between a well person and a cancer person is that we have absolutely no where to feel safe.  Before I got cancer, I always could find a place of safety, it could be home, in my office or with my family.  That has been completely stripped away and now there is no place of safety or refuge.  I’ve been a pilot for over 25 years and a state trooper for 20; do you think I’ve experienced a fair share of fear and anxiety?  But none of those experiences prepared me for the absolute emotional destruction of a cancer diagnosis, knowing I carry this evil bastard everywhere I go.  When a well person goes to sleep at night and has a bad dream, they can wake up, shake it off, pull the covers over their head and all is well.  When cancer is the bad dream, you wake up but can’t shake it off, it is part of your anatomy and it is actively trying to kill you.  My guess is this is the same thought process someone with ALS or MS or some other terminal disease goes through, not just folks with cancer.  I don’t expect a well person to understand and there is probably some eye rolling by some who are reading this post.  Well if that’s you, please enjoy your charmed life while you can because someday your eyes may roll back far enough to see exactly what I am talking about.

And now the update:  my cancer is back and in full force.  What the Doc’s thought might be granuloma is now thought to be cancer.  I am currently in the hospital for 3 days getting the crap knocked out of me with new chemotherapy.  It is called R-ICE, and it is a beautiful experience.  Last night I broke out in uncontrollable scratching, uncontrollable shivering and then the shot of Benadryl came and took my cares away.  My bloods are a bit hokey due to being so close to my last chemo rounds, but not too bad. 

If you are looking for a way to support me, prayer is always a great thing.  If this chemo works then I’m off to stem cell transplant and hopefully a cure.  See…this chemo is not meant to cure me, it is meant to rid my body and bone marrow of the cancer so I can receive a transplant of my own stem cells.  This road is really crazy right now and there is a fair share of crap or success that can happen.

On the bright side, the food here is fantastic and the medical staff has been top notch, but for $73,000 per night I guess I can expect that.  Get good insurance folks, if you don't have it then get a good bankruptcy attorney.

Cheers!!

What a crazy ride

So my last treatment was July 28, 2015, THANK GOD!!!  I really don't recommend chemo to anybody, unless of course you come down with cancer and need it to save your life, then go for it.  My last PET scan in early August showed the granuloma's, more on that in a bit, but the chemo really knocked the tar out of the cancer.  

Am I in remission?  I don't know...I have these things that show up like cancer in the scan, but have been tested and are not cancer.  I think only time will tell, but I feel well, not great, but I think it is just a byproduct of the chemo.  My stanima is really slowly coming back, it is probably about 50% of what it was prior to chemo.  Of course every ache and pain felt  I automatically think it is cancer, so that sucks.

Now for the granuloma's.  On my scan, mainly in the pelvic region, there are areas that look like cancer.  I had one tested back in January and it came back negative which prompted a surgery to grab a node from another area.  That node tested positive for lymphoma.  The "negative" node came back as caseating granuloma lymphanditis.  So after chemo was done, the oncologist wanted to get a bigger sample just to make sure they could run enough tests and not miss what could be a small amount of cancer.  So dutifully I went into surgery toward the end of August and woke up with a perferated bladder.  Consequently I had a catheter for 5 days while the bladder healed, but they did get a large sample for testing.  

The sample has showed no cancer, they even tested it genetically against my cancerous sample and they were different from each other.  It is an abnormal cell, but currently not cancerous.  The oncologist thinks my body will most likely just handle it as an infection and they will go away.  I really have very little pain from them, most often times none at all, but occasionally it will flare a bit and remind me they are there. 

So here is the real bummer about being a cancer patient.  Only time will tell if it is gone, there is no magic test or scan that can tell me what the prognosis will be.  Next month I am being scanned again and I could be filled with cancer....or not.  It is an absolute horrible thing to live with and if you have had cancer you know exactly what I am talking about.  If you haven't then lets pray you never will.  

So the good news is that I am done with chemo and am probably free of cancer, the bad news is that only time will tell.

  

ALMOST DONE

My first treatment was on February 24 2015, today is July 09 2015.   My last treatment should be on July 28 2015 then just chemo sick through the middle of August.  The chemo was every 14 days on the dot, no misses, this is really important for long term survival.  So in a nutshell, about 6 months of chemo then the recovery process.  I've been told to expect up to 1 month of recovery for every month of chemo, I hope it doesn't take that long but we will see.  

So this is where I am at....my last PET scan was good except for the "caseating granuloma" located in my pelvis.  My oncologist said that these granuloma's are associated with an increased survival rate BUT I really need to have surgery to make sure there is nothing nefarious in there.  Yea, I said it...nefarious...not bad with my chemo brain.  The surgery should be around the first week of September, we need to wait for my bone marrow to be healthy enough to support the immune response required of surgery.  Now for some of the more fun side effects that have really come to light lately.

Chemo Brain:  Holy crap on a cracker, this is a real issue.  I can't tell you how much I forget and get stuff mixed up like days, times, who I spoke to and what we talked about.  I wonder when this is over, does it hurt when your brain comes back?  It is a large whooshing sound followed by a bright light or is it a more gradual process.  I'll let you know.

Eye Sight:  My eyes have gotten so bad, the computer screen is blurry as I type this.  Maybe that is normal for the more visually impaired but it is not normal for me.  The oncologist says this is normal and my eyes will come back after the chemo is over.  I love to read but it tires me out so bad that I haven't been able to do it during the chemo.  My goal was to read Lord of the Rings again but my fear is that my eyeballs would fall out after the first few pages.  

Neuropathy:  Imagine having 100 needles attached to your fingers, pointy end toward the skin.  This is neuropathy.  If I grab something wrong or accidentally flick my finger on something it will bring me to my knees.  My fingers have swollen into small sausages and in the event of an apocalypse they will make a great breakfast treat for my family.   

That's it for now, thanks for the prayers and taking a moment to read the blog.

Update

Hey everyone.....this will be a quick update.  

Last week  completely sucked!!!  I went to the doctor on Tuesday and came back with a bronchitis diagnosis that the doc was concerned would turn into pneumonia.  So three prescriptions later, and now a week of antibiotics, I am feeling pretty good.  It is really incredible how any little thing is magnified when doing chemotherapy.  Usually, the off week is pretty good, but it took until Thursday to begin to get out of the funk.  Which brings me to a new mental attitude.

I GIVE UP!!!!!  No not on the cancer, but on the treatments.  Let me explain.  Up until this last treatment, my mindset was to "tough" it out.  Take as little meds as possible, believing I would be better off and more healthy without them.  Yep, sticking my chemoport laden chest out and daring them to zap me, I can take it.  Well, evidently I would make a horrible POW, because I have relented to the torture and now meds are my best friend.  

That is 10 meds in the picture above.  Most are taken as needed and I need them a lot!!  There are stomach meds, inhalers, antibiotics, protonics, cough pills and common aspirin.  Prior to this I took NOTHING, maybe some ibuprofen, but that was it.  Now I feel like a druggie waiting to get my fix to feel better. 

My hope is, that by the end of August, I am off all this stuff, but thank God that modern medicine  has them.  What was it like to have chemo 20 years ago before they could control the nausea or the excess stomach acid?  Folks would lose huge amounts of weight on chemo, I am getting fat..fat...fat.  I really can't complain too much.

My last treatment should be on July 28, that means 5 more to go, and they just can't go fast enough.  

Stay thirsty my friend!!!

My oncologist does my hair

Today is Day 2 from my last knock down, yesterday being day one, chemo day.  These things are not getting any easier, except that I know what to expect.  The mind games are the hardest, very real and some times really scary.  Here is quick update of how the therapy and days after are going:

• Chemo day:  By the time I get there I am in full on anticipatory mode.  My blood pressure that usually runs around 120/75 is sitting at 130/90++, but the nurses and doctors know this is normal for chemo day.  I've seen other patients have to be put on anxiety drugs sitting in the chair just to get their chemo done.  I get nauseous and will gag like crazy over the littlest thing.  The nurses are fantastic and very caring, they do their best unfortunately it is my mind that is making it a miserable experience.  After chemo, it takes about 3 hours, I rush home and do the best to get my mind off what just happened.  Mainly by working and getting email and all the rest caught up.  Then it is full temperature monitor time.  I almost went to the hospital two treatments ago, my fever reached 101 which is very dangerous for a chemo patient, but thankfully I fell asleep and woke up a couple hours later at 98, so it worked out.

• Day 2:  All in all not a bad day, the problem is I feel better than I actually am.  This morning I walked downstairs and it felt like I just ran a 100 yard dash.  Even typing this entry is difficult, my mind knows what I want to say, but the mistakes are endless.  These next 7 days or so, I really have to be careful that I take my meds, if I miss some then the nausea is intense and the gagging can be really bad.  Tonight will start the strange sensory perceptions associated with this chemo regiment.  Little things will set me completely off, like taking a leek can be a full on gag fest.  The other day my beautiful wife made a sauce, that I love, but for some reason it tasted like a pool towel from a hotel swimming pool, yea that's weird.  My teeth are crazy sensitive and peanuts and anything crunchy is out.  
• Day 3: Knock down, drag out tired.  I'll take a 3 hour nap, in between fits of gagging, and basically sit and be quiet all day.  
• Day 4:  Tired but almost functional.  I usually only take an hour nap, and I used to go for a 1 mile walk, well that walk has ended and I am lucky to get around the block.  The effects seem to be accumulating and it is getting to be longer recovery times.  The sensory issues are fantastically bad on this day.  Everything around me seems hell bent on making me sick and want to throw up.  Just thinking the wrong though can really get me going and I have to completely reset my though process to feel better.
• Day 5:  Usually starting to come around, but be careful.  The morning can be notorious or good, it's kind of a crap shoot, but the afternoons I can reasonably go out side and visit with folks for a while.  The real issue is that I don't know when symptoms will hit me.  If we are talking and all of a sudden I need to leave, don't take it personal, I just will have this all of a sudden feeling of impending doom and may have to go lay down for a while.
• Day 6:  Mind is usually really clear, sensory issues are waning, and I am feeling human again.  Still have to be careful, but I am functional for longer bursts and the physical surprises almost disappear as long as I don't do anything too physical.

• Day 7 through 13:  Just a gradual climb up to normalcy.  The real issue is that this regiment makes you "neutropenic,"  I have zero immune system.  Large crowds are completely out, when I go to Dr. appt's there is no chair sitting, wash hands religiously, hand sanitizer everywhere, stay away from small kids and generally just live in a small bubble that is somewhat controllable from a germ perspective.  

My health has been reasonable, not sure what unreasonable would mean at this point, but nothing that has sent me for a hospital stay yet, so that's good.  Next week I go in for tests to determine what the infection in my pelvis is and I am having my original biopsy sent to the University of Colorado for a second opinion.  Not sure if insurance will pay for it, but we'll see.

So here's a couple of things I've learned form this:

• You can't ever have "too good" health insurance.  The total bill for this so far has been over 73K, my total is a fraction of that, but still a very real and savings busting charge.
• Get some kind of disability insurance.  My employer has been fantastic, but yours may not be.  Working while on chemo is doable if you have the right job.  If you make your living through physical prowess you can throw that out the window.  Get good insurance.
• Don't tell yourself you won't get cancer.  The stats are that anywhere from 30% to 60% of people will get cancer in their lifetime so start planning for it.  
• Accept the help from other people.  We have had several folks bring meals and I have to say a heartfelt thanks to Angela and Dean, Jenny and Ryan, Cari and Scott, Dave and Kathleen, Jen and Jeremy, Rob and Jen and my wonderful Aunt Betty....your meals have been fantastic and I can't tell how uplifting it is to have your support.  

Well that's all for now, when I find out more or have some other sort of major calamity I'll let you know.  

Oh yea just one more thing.  I always thought that you only lost the hair on your head, well that is WRONG.  You lose everything from the tips of your toes to the top of your head.  I fact, I'm sort of like this without the 6 nipples and buck teeth.  

But oddly enough, my facial hair is still mostly in tact and my eyebrows, while becoming less and less, are still there.

Hope you are doing well.  Talk to you soon.

Good news and OK news...a mixed bag

In my last post I mentioned that a new pet scan was ordered and it would be a benchmark for seeing if the cancer was being treated.  Well the good news...my Doc says I am cancer free.  If you look at the prior scan, pretty much all the white spots are completely gone.  The chemo has demolished the cancer and it really is an amazing thing to see.

Now the mixed bag portion and a little history behind it.  Back in January I had a lymph node biopsied in my pelvis.  This was the "fun with long needles" test I mentioned in a prior blog.  What I've learned is that the Doc's really take a less invasive approach when possible.  Instead of just cutting me open and risking all that has to offer, they start with the methods that are much less invasive looking for a diagnosis.  Well this biopsy showed no cancer.  It came back as a "granuloma" which is a fancy term for inflammation.  What it meant, was that the node in question was fighting an infection within the node and not cancer.  The node was approximately the size of a lemon, which is huge for a lymph node, but there was a chance that I did not have cancer but some other type of lymph disorder.  The second biopsy was done surgically and taken from behind my heart.  This one showed the classic hodgkin lymphoma diagnosis and so began the chemo.

So after my last scan, which was just last Friday, my Doc called me on Monday and told me that my scan was not completely clean.  There are about 5 nodes that are still fired up but he thinks that it is a byproduct of the cancer and not the cancer itself.  I was completely devastated, and I mean completely.  No sleeping on Monday night, nothing but worry, loathing and end of life thoughts.  This was just as bad as the initial blindside and it really destroyed me for about 24 hours.

I met the Doc the next day on Tuesday prior to chemo and thank God I did.  He really spent some time explaining what was happening and what it meant.  The "failed" biopsy in January is really a Godsend and he completely believes I am 100% cancer free.  The 5 or so lymph nodes that are still hot spots on the scan are just fighting an infection caused by the cancer.  He explained it like this:

"Say lightning hits a field and a grass fire starts, lets call this grass fire the cancer.  The fire will move along the field engulfing all in its path.  It burns down buildings trees and eventually comes to an area where someone dumped some tires.  Well, it catches the tires on fire and they just sit and smolder.  The fire department comes along and puts out the major problem, the grass fire, but now they have to contend with the tire fire.  The tire fire isn't going anywhere and is really harmless, but they want to put it out anyway."

So I do believe I am cancer free, but now we will be working on figuring out what is causing the granuloma.  It may require another biopsy so we'll see.

As a side note, thank God for Rhonda.  I had chemo on Tuesday, on Wednesday my oldest had knee surgery and today she is going for a job interview.  She has been burning it from both ends lately and she is my HERO!!!!!

ME....The Good the Bad and the Ugly

Hey folks

Thanks for coming to my blog on the trials and tribulations of Hodgkins Lymphoma.  This is the first blog and I want to give you a little background on the strange world you have decided to partake in.

First and foremost, it is a hard realization when you have been diagnosed with cancer.  As cancer goes, this is a good one to have, sort of like deciding which type of gun would you rather be shot with " a .22 is so much more survivable than a .357."  They both stink, but you know where I'm going with this metaphor.  Understand this a journey that most will go through, the fact you are reading this shows your willingness to jump on board and share it with me.

Thank you, but let's get a few ground rules in place before we begin.

This is MY view on what is going on around me and is not intended to make a broader statement concerning cancer, its implications or its politics.  If you are of the activist type, please know that I am not.  My main concern right now is how much of my finely quaffed hair will end up in the shower drain, not too concerned about cancer research, support groups or governmental funding.  Yes this may be short sighted, but I'm 45 and being short sighted is a natural occurrence as you age.

Please understand that my viewpoints come from a very simple understanding of what a quality life means.  Tomorrow my youngest and I will spend the day in the garage working on his YZ 85.  We will be wrenching the whole day away, listening to 80's rock and me smoking a quality briar with even better quality baccy, probably my last one for a while.  The day after that, I will be teaching my oldest on the finer points of changing the oil on a 95 Nissan Pathfinder.  Good Times!!

God, Family, Country...or sometimes Family, Country, God....or maybe Country, God, Family....This is my natural, really simple order of the universe.  As you can see, they will get mixed up, divide by 3, then reduced to the lowest common denominator, but they are a constant that has always added meaning and purpose to my existence.  If you can't find value in at least one of these than I feel sorry for you.  You are probably a very confused and misdirected soul looking for answers in the short term instead of the long term, blaming your mother for her being human and only finding satisfaction in your most recent purchase, which you will bury in a closet never to be seen again.

I have an absolute belief in God, but I am not in any way an evangelist.  I'm a recovering Baptist and have found a wonderful home at the First United Methodist Church of Castle Rock.  My guiding principal is Matthew 5:9, which really explains my career choices in life.

Lastly, I will never mention anyone, air dirty laundry or use this as an attack machine.  Some of my musings will probably amalgamate scenarios and folks to get my point across but there will never be harm directed at anyone, situations yes, but you NO.  I promise to be honest, little to no P.C. but all real.

Good luck

Fun with cue balls

Riding Unicorns and Farting Cotton Candy

So here we are, post number 2 of this little adventure.  Before being told that I have cancer, I was just like you.  Plodding along in life, trying to do the right things, taking care of my health, eating mostly the right foods,  while exercising and just trying to live this wonderful life that Colorado gives us.  It was an amazing existence, finally I felt that the fruits of my labor were coming home to roost and in a very good way.  My kids are teenagers, and good ones at that, my wife is a complete saint, I have friends that are more like family and a job that I am so damn proud of it hurts.

For those of you that don't know me that well, my life has been a terrific ride.  I grew up mainly in North Dakota in a small and wonderful town.  A town that taught the value of hard work, if you were willing to learn it, and a town, that like so many others that dot the American landscape, showed young men and women what it meant to be part of a community.  Those of you that grew up in small towns know exactly what I am talking about, you can't be a faceless number in a small town, everyone knows you and your family's business.  This can be a motivating force in your life and in mine it certainly was.

I turned 21 in Army Flight School down at good ol' Ft. Rucker, Alabama.  I had already been in the National Guard for 4 years, going to basic training between my junior and senior year of high school. Newly married to the love of my life, soon to be an Army pilot and Warrant Officer things were good, damn good.  The Army sent me to Ft. Carson, Colorado and thank God it did.  I was sent to the most beautiful state in the country, with the Rocky Mountains as a backdrop to my everyday, I knew this was it, this was home.

My stint in the Army over, and unfortunately after losing too many friends to the dangers that is Army flying, I got out and was accepted into the Colroado State Patrol.  I know every LEO and fire fighter is proud of their organization, but I actually have a reason to be :]  Like all Troopers, I've faced blinding snow storms and the carnage they bring, arrested some of the worst that society has to offer, been called to quell riots, investigated death and helped save lives.  I've flown governors all over the country, looked for snipers and cop killers, tracked beetle kill, forest fires, helped with homicide investigations, taken life saving medicine to rural communities and so much more, it is hard to list it all.  Yep, after 20 years, 3 moves and 3 promotions I had arrived, firmly seated on top of the multi-sparkled beast called my life, I was riding a unicorn and farting cotton candy.  

Then in December I went to the doctors office for what I thought was a hernia.......boy was I wrong.

My Favorite Testicle

Modesty was never my strong suit and after being poked and prodded over the last 6 weeks it is even lower on my list of priorities.  This will be a quick story of how all this came to be. 

Fear is really an amazing motivating factor.  I have 3 great, completely baseless and not grounded in reality, fears in my life, in no particular order they are:

     1 - Mountain lions...my fear of a mountain lion is so ridiculous and baseless it can paralyze me to think there may be one around regardless of where I'm at.  I actually thought of putting "eyeballs" on the back of my mountain bike helmet after a good friend of mine concocted a story of mountain lion attacks in Douglas County.  As far as I'm concerned, they are able to fly, swim and call in drone strikes to slaughter their prey. 

     2- Heights...yes as a pilot for over 24 years I am deathly afraid of heights.  Putting up Christmas lights every year at my house is a grueling, horrific experience of having to be 5 feet off the ground on a ladder.  My wife has finally relented to this phobia and does not require me to be on the rooftop.  I guess after seeing me year after year crawling around on my belly with tears rolling down my face the hilarity of it has worn off.  Did you know that mountain lions actually live on roof tops??
  
     C- Testicle pain...I've been hit twice in my nether region where I thought one of them was actually going to pop out of my mouth.  You know the sickening feeling of intense searing pain, immediate large scale diarrhea and the sudden urge to vomit yesterdays breakfast.  If I had my way, my 2 little friends down there would be lying on a puffy cloud as cherubs lightly rub them down with frankincense while a harp plays Jerry Lee Lewis's "Great Balls of Fire." So after about 4 weeks of a really weird pain in my right one, I went in to see my doctor. 

With any great phobia comes great responsibility, and I had a responsibility to figure out what the heck was happening.  As an avid mountain biker I have had pain in that area before, mainly due to bad bike shorts or some other mechanical intervention, but this was a little different.  This woke me up at night when I would roll over, any movement was super sore and at times it felt like a needle was shot through the back my hip and all the way through my right nut.  Sounds fun doesn't it??  

Now, my doctor is a fantastic human being, he is a graduate of West Point, sharp as a tack and really one of the nicest caring people you could possibly meet.  With that said, I still had a fear that he would break out a pair of crocodile shears to complete the exam.  So there I stood, pants down, sweating profusely, searing pain in my mind and certainly elsewhere while this gentle soul completed the exam.  "Matt" he said, "I don't feel a hernia, lets do an ultrasound."  Thank the Good Lord Above that he said that.  Just a couple weeks later the pain went completely away, none left what so ever.  It peaked about a week before Christmas and in hindsight, if it weren't for the pain I would have never found out about cancer.  Yes, my right nut is now my favorite, back to cloud status, cherubs and harps.  It may very well have saved my life!!

A quick note about the medical process and modesty.  Most folks, until they become sick, have this defensive attitude toward their bodies and who sees them.  After the last 6 weeks, I now realize that getting well requires you to completely release that modesty and just accept the fact that medical professionals do their best work when your keister is hanging out of a flimsy, front covering gown.  The conversation has typically gone like this:

     "Hello Doc"
     "Hello patient, get naked and put this gown on so your butt hangs out"
     "Well ok, but (no pun intended) I am just here to get a prescription"
     "Listen patient, what you fail to understand is that life saving sunshine is pumped straight into your rectum in the event of an emergency"
     "Oh...ok doc, but can I keep my socks on?"
     "Dear God man, get a grip on yourself, socks are a witches brew and the work of the devil!!"
     "Oh...sorry doc"

Yea, maybe a little over the top, but not by much.  You spend a lot of time trying not to leave a backside snail trail as you sit all but naked on the finest naugahyde your health insurance can buy.  

The tests are the funnest part, ultra sound, CT scan, PET scan, Testicular ultra sound, blood work, biopsies and surgery.....but more on those later.

Fun With Cue Balls

Making the World Right

If you're a Star Trek fan you are going to be sorely disappointed with cancer testing and diagnosis.  The thought of laying in the medical bay while "Seven of Nine" stands over you with a tri-corder and an instant diagnosis is a great fantasy, but reality is really something different.  
I first saw my doctor on December 12, and since December 22, I've had the following tests:

1. Ultrasound - not invasive at all.  Super easy, a bit ticklish and done in 20 minutes.
2. CT scan- this was done on Christmas Eve.  After being told I had an unidentified mass in my pelvis, I felt like a man walking toward the gallows going to this test.
3. Blood tests- Blood, Blood and lots of Blood in a cancer diagnosis.
4. PET Scan - My darkest day in this whole episode.  This is when you have a realization that  highly trained professionals, who have given the better part of their life to understanding and treating cancer, believe you have cancer.  
5. Testicular ultrasound - Ok, this was not fun for me, see blog above, the doctor prescribed anti-anxiety meds which were AWESOME!!!  No wonder so many folks are addicted to modern pharmaceuticals. 
6. Pelvic Biopsy - Otherwise called "fun with long needles!"  At least the meds are good.
7. More Blood tests
8. Mediastinal Surgery - Needed to get a really "hot" lymph node next to my aorta because the pelvic biopsy showed no cancer.
9. Heart Function Test
10. Lung Function Test
11. Chemo Port installed

During these procedures the medical staff has been unbelievably, undeniably, unmistakably FANTASTIC!!!!!  If any of the folks who have helped me over the last 2 months are reading this, please know you have been true professionals and the level of caring and compassion is really amazing. 

Think of a person't usual experience with customer service, maybe a smile from the clerk at the grocery store, or a pleasant IT rep as you try to diagnose a computer issue or your mechanic cutting you a break after they fix your car.  Well, the folks responsible for all my tests have been on another planet when it comes to seeing me through this.  THANK YOU!!!!  A great many organizations could learn a valuable lesson from you when it comes to taking care of people.  

The crazy thing about these tests is not so much the pain or side effects that are involved, but each one is a troubled monument on the scenic byway between the old life and my new one.  When you are on this fun little detour, prior to a diagnosis, you are damaged goods.  Don't expect to think or act the same, you feel like you are standing in the deep end of a pool while an unknown force controls the tube allowing you to breathe.  You don't know at what moment the air will be shut off or if you will be allowed to walk to the shallow end, so you just stand there, in this limbo that becomes your life until a diagnosis. 

Few people would describe me as emotional, I'm a firm believer that most guys have basically 3 emotions; Pissed, Happy or Horny.  That's about it, so the first few weeks of this was a real eye opener, then just before my surgery I got Pissed and all was right with the world.

Chemo Ports, A Fib and a Room with a View

Nobody told me cancer would be easy.  I'm not the type to see rainbows and think happy thoughts as I move through the world, much more inclined to identify pro's and cons, measure odds, prepare for the worst then just go for it.  The other night I had an experience that completely blindsided me, was potentially deadly and really opened my eyes to this little adventure I'm on.

This last week I've had a number of tests and procedures:

1. A multigated acquisition (MUGA) scan:  not a bad test at all.  They draw blood, put some type of radioactive isotope in it, then re-inject you with it.  Before starting chemo they need to make sure your heart is strong enough to handle the toxicity of the drugs.  The only know side effect is when you get angry, you tend to turn green and rampage around town, but thankfully that hasn't happened yet.  
   
2. Pulmonary Function test:  blow in a tube for about 30 minutes then leave.  Super simple, one test where nobody pokes you with needles...thankfully.
3. MediPort installation: more later but the turning point for the week.  Affectionately called the "little bastard." 
4. Electrocardiogram (ECG): Yep, here comes the heart issue.
5. Arrhythmia drugs: oh crap this is real.
6. 6 Blood draws plus a fun little IV

So what happened?  The MUGA and pulmonary test were conducted on Monday, the technicians were fantastic, as usual, the tests went perfect and all indications were that my body is in great shape to start chemo.  Tuesday was the day to get my "port." A port is a small little device with a reservoir and silicone bubble they put under your skin so they don't have to tap the veins in your arms for meds and chemo drugs.  The reservoir is attached to a catheter which is threaded into some big vein, superior vena cava, for example, and stops at your right atrium.

Now most often, this little bastard gets put in with no issues whatsoever, but here at the Funwithcueballs household, we are over achievers.  I got home around 5p from the procedure and felt really sore.  This was probably the most painful procedure yet. I took 2 pain killers and hung out on the couch.  Then at around 10p I took one more and went to bed. The moment my head hit the pillow my heart made an amazing transformation, it went from life-giver to two rabid squirrels fighting over an acorn.  I could feel my upper chambers giving my lower chambers the finger and begin a sprint toward some imaginary finish line.  My lower chambers just could not keep up so they decided to line dance in perfect 3 step timing hoping to snag a beat or two from the upper.  Then just as my panic hit an all time high, the pain killer kicked in and I fell asleep.  After a fitful night, I was out of bed at 0630 and waiting to get the kids to school so I could tell my angel wife what was going on.  We were in the ER by 0830.

When your heart does this, you are not yourself mentally.  The heart produces about 20% less pumping action and therefore you lose quite a bit of mental capacity.  I was in a complete fog while my wife took me to the ER, not incoherent but not really processing things correctly either.  By 9 am I was on a gurney, they hooked me up to an EKG and my resting heart rate was over 150 beats per minute.  Squeezing out a fart would jump my rate to 170, then it would drop to 130 then rebound to 150.  So here comes the therapy.

I don't know what they gave me, but here is how the conversation went:

     "Mr. Fun, nice to meet you, I'm Doctor Heartstopper"

     "Well hello Dr. Heartstopper"

     "Glad to see you are naked, yep your keister is in the right place.  You never know when sunshine needs to be pumped"

     "Yes Doctor I know"

     "Well, we are going to give you drugs to slow your heart down and change the rhythm.  We will do 3 rounds, or so, and if it doesn't work we will go to plan B."

     "Plan B?  Pray tell Doctor!"

     "Cardiovert!!!"

     "That doesn't sound too bad"  Now remember I'm operating on 20% less brain function.

     "Well patient, it's not, we just zap your heart, stop it from beating, and really hope to start it again.  See ya in a couple of hours."

Ok, not a perfect word for word transcript, but close enough.  As my situation progressed I actually started thinking that a heart stoppage would be a better situation than what was going on now.  Maybe I would see the light, or do that hover thing above my body for a while.  Now that would be super cool, but thankfully it did not happen that way.  

At about 1pm, I was talking to the physicians assistant assigned to me when low and behold, I looked at her and said "it stopped."  Just like that, my heart went back to completely normal, normal sinus rhythm, normal heart beat and a completely normal feeling.  The head cleared, I could concentrate and really understand stuff again, it was fantastic. The PA looked completely astonished, it happened right in front of her and she really seemed excited for the outcome.  Even Dr. Heartstopper was happy about the outcome.  

Around that time another Doc came in, a specialist in internal medicine.  She took a history and really concentrated on the port that was installed the day before.  What seems to have happened, is sometime during my little journey from couch to bed, the port may have moved and "tickled" my heart wall.  This tickling caused my heart to say "what the heck, I'm out of here" and begin its race toward oblivion.  After an echo-cardiogram, you could clearly see my port extending into my right atrium, I was assured it was okay to be there, but ideally they want it a bit more upstream and sitting in the vein.  

Now the fun part.  After all was well, and after being on a gurney for 7 hours, I started to get a little bored.  I could see the machine that was transmitting my vitals to some telemetry unit and decided to have a little fun. 

 It really is an amazing thing what holding your breath until you are ready to pass out does to your vital signs.  Heart rate slows, of course breathing shows zero and the pulse oximeter begins the weird little countdown toward zero.  So there I was, turning blue and having a hell of a fun time setting off all the bells and whistles warning of a problem.  But more importantly, I needed to see if my ticker was okay, was the little bastard still affecting me, or could I take a bit of stress.  Probably not the best way to find out, but it was fun anyway.

The internal medicine Doctor admitted me for observation and away I went to the room.  I stayed at Skyridge hospital and boy oh boy have hospitals come a long way.  It was like a 3 star hotel room with the wonderful views of the Rocky Mountains.  I actually ordered room service from a menu for dinner, no Salisbury steak and canned veggies, but actual slow cooked pot roast, broccoli and a great desert.  The TV worked, I could order movies and ended up having a little cardiac induced vacation for the night.  

Now about Dr. Heartsopper and the staff at Skyridge.  WOW!!!! Wonderful, caring folks indeed!!  I am still amazed at the level of caring and empathy these medical professionals display.  You are truly amazing and thank you for all you do!!!

The Wraith in My Dreams

What where you doing in 1984??  

I was starting my sophomore year in high school, really getting into the meat of what it means to be a teenager.  Living in a small town, having girl friends and trying beer for the first time, yep living the teenage American dream.  In our town, rated R certainly did not stop enterprising 15 year old's from seeing a movie or two or three.  Nope, we had it down to a science, just wait for a group of adults to show up and follow them in, easy peasy.   Well, that year I saw what I thought was the scariest movie ever made, and little did I know that 30 years later it would become all to real.

Cancer IS Freddy!!!!!

One two, Freddy's coming for you....Three four, better lock the door....Five six, grab your crucifix....Seven eight, gonna stay up late....Nine ten, never sleep again!!!

Freddy, a scarred and disfigured murderer who is condemned to walk the halls of peoples dreams.  A boogeyman incarnate for my generation, something you try not to think about when you are awake when the sun is up and shining, but an unknown terror once your head hits the pillow and sleep overtakes you.  You can control your thoughts during the day, make the bad go away, concentrate on family, friends and work.  At night is when the real surprises hit, when the boogeyman comes out to play and your fears become a tortured reality.  At times you awake steaming with fear and anticipation of what your life may become, telling yourself over and over it was just a dream and reaching for a solid indication you are at home safe.  Then you realize that home is not safe, living inside you is that meandering little murderer that has taken so many real lives and has maimed so many others.  

On CHRISTmas eve 2014, after finishing the CT scan and after having a fantastic CHRISTmas party at our neighbor's house, I sat on the couch and looked at the tree.  My two sons, already in bed and filled with anticipation for what tomorrow would bring, my beautiful wife upstairs getting ready for a night's sleep, and me just sitting there.  A very strange moment indeed when I realized that on the day we celebrate the birth of the world's Savior, a door opened to my life and in walked Freddy, always with me now whether I am awake or asleep.  Always tickling me with those long knives during the day, but at night he tightens the glove and begins to poke and stab, chasing me around my dreams until I relent.  

But I won't relent, rot in hell Freddy!!!

The nightmares are not as frequent now as they were during the first month of this little adventure.  Every night I would wake up, sometimes gasping for air, recovering from a dream of being drowned, or running a race where there were no finish lines with some slow unrelenting force chasing me down.  Thankfully they are farther and fewer in between, I think having a diagnosis and knowing what the treatment will be really helps with the psyche.  

I am going to share one that has stuck in my mind, left me panicking at 2 am, telling myself over and over it was just a dream, that I was home safe...well you know how that goes.

#1 - The Flight, The Crash, The Cancer Ward

A little background - An extremely good friend of mine, an absolute part of my family, is also a pilot.  This is a buddy, lets call him Ron, that I would trust with my life and will no doubt be a part of me for as long as I live.  So now the dream.

I was taking Ron on a flight to Hayden Colorado.  Hayden is a small town just West of Steamboat Springs.  My wife and I lived there for a few years during my first duty assignment.  Hayden is a typical small town, but has an "international" airport to service the ski traffic going in and out of Steamboat.

It was a beautiful sun shiny day.  Fresh snow on the ground, the runway recently plowed with large snow drifts on either side and airliners filled with skiers hopped in and out of the airport.  Ron wanted to fly but it wasn't my plane.  It was a plane I flew for work and I knew letting him fly would be violating a great many policies and procedures, but off he went as I stood by the runway and watched.  

He made two passes, doing just fine, then out of the blue came a regional jet.  The jet was on final approach, announcing his position and doing everything just right.  Ron, unfamiliar with the airport, narrowly missed the jet then lost control and crashed into a snow bank. Fearing the death of my brother from another mother, I ran to the crash site.  Ron walked out just fine, then it hit me, my boss would have to know.

Now as dreams so often do, I went into fast forward mode.  My boss called me into a meeting at Steamboat Springs.  A meeting so important, he would come to me and we would have it at the local hospital.  He sat there staring at me, saying over and over how bad this was and that action would have to be taken.  I plead my case that I had cancer and couldn't afford to lose my job or my health insurance.  He just sat there with a grim look on his face and said over and over how something had to be done.  

Now in reality, my boss and I have worked together for quite a few years, beginning as peers, but now as my boss, so you know the dynamic.  Letting him down is more than a boss/employee situation, it is disappointing someone you respect, and who's opinion you really cherish.  So far in the dream I have almost killed one of my dearest friends and have really let down another.

So I sat there in the hospital, feeling the gravity in his voice and studying the disappointment in his face, knowing he would fire me and my cancer treatment would stop.  I was trying to hold on to my career of 20 years, couldn't believe how carelessly I could throw it away.  Everything I had worked for is now gone and holding on is all I can do. 

Then I really had to PEE.  

Getting up I walked through 2 gray double doors.  Approaching the doors I began to hear the screams and moans of torment.  Opening the doors I was met by a large room with 50 beds, a room with no organization but beds just flung into the corners and a disorderly maze that meandered over toward the bathrooms.  As I walked through the room, desperately trying to find my way out, a nurse told me I was in the Cancer Ward.  But this was no ordinary cancer ward, this was the death ward, and all 50 people where dying.  Morphine pumps dripped, some just laid there quietly and others were suffering a violent struggle against Freddy.  

In one particular bed was an older, rail thin gentleman with a morphine pump the size of an encephalitic pumpkin.  Hospital gown draped over his front and long, spindly arms filled with IV bruises suspended at his side.  His face would grimace, the morphine pump would let out a "psst" then tranquility would find him.  A peaceful dormancy, kept warm by a narcotic blanked that enveloped his body.  I approached him, studying his last moments on earth, relieved that it would be a comfortable end for him and me.  

A grimace, psst, tranquility.  This went on for several minutes, like a heart beating a regular rhythm.  A grimace, psst, tranquility.  A grimace, psst, tranquility.

A grimace....nothing.   A grimace....nothing.  A grimace....eyes suddenly opened wide and fixed on mine.  Bloodshot eyes filled with cancer and hate, hate that I was standing there alive, not yet tormented by Freddy, but behind the hate was satisfaction that soon I too would struggle.  Satisfaction that Freddy and I would have our little dance, that even though I was alive, he knew I was dead, I just didn't know it yet.  

Then the howling began, his mouth, at first strained with pain and suffering, formed a circle.  His dry, cracked bloody lips slowly peeled back and teeth gnashed like knives trying to find their mark.  The bruise filled arms began to flap in the air as a nurse ran over to pump more morphine but it was too late.  Death was with him, he was struggling, trying to get away but being held back, Freddy was winning.  I turned and ran, past the patients, past the moaning, down hallways with no clear direction.  Freddy was chasing me and I didn't know where to turn, the long knives would find me and begin their poking and slashing.  One more hallway, a flickering fluorescent light, more running, more running, more.....

Choking I awoke, heart racing, but in my mind it was real.  Laying there gasping with tears streaming down my face, knowing I let my family down, all that I had worked for was gone.  Then slowly reality began to set in, the fog of my subconscious war lifted and I laid there, relieved but terrified.  The clock read 2:12 am, I could sleep for another 4 hours but no way.  I couldn't re-enter that world, couldn't open the door to whatever kingdom Freddy ruled over, tonight my sleeping was over. 

It was just a dream.

A dream I will never forget.

Hi Ho..Hi Ho..It's off to chemo I go..inject some junk..put you in a funk..Hi Ho

"Life is not a journey to the grave with the intention of arriving safely in one pretty and well preserved piece, but to skid across the line broadside, thoroughly used up, worn out, leaking oil, shouting GERONIMO!"

Pretty neat quote ay??  I never really understood the folks who think they are getting out of this thing alive.  We all have a set amount of rotations around the sun, not one day more or less and there is not a damn thing you can do about it.  So live your life, love those around you, go to Church, work harder and play harder.  You never know when it will be taken away, if only for a short while.

It is 4am as I type this out, you are reading a side effect of chemo treatment number 1.  More on that later, it was a great, crazy and scary day yesterday.

The day started like most days here in the Cueballs household.  Kids up by 6a, my fantastic wife making coffee and breakfast for the boys, but oddly enough I slept until around 7a.  Normally I am up by 6:15 helping, ok actually "supporting" this school day ritual but yesterday I really had to drag myself out of bed.  My first thought was I was just being lazy, but it could have been a little more than that.  

I've been having a couple cancer symptoms, one that is pretty much constant the last two weeks and the other just rears its head every couple of days.  

The first symptom is a really persistent heaviness in my chest.  Sort of like the beginning of a cold, an occasional cough but nothing produced.  It feels like fluid is building, sometimes it is worse than others but it is always there.  The second is really odd and not me at all, unexplained, immediate, where's my pillow tiredness.  It will hit me out of the blue and come hell or high water I am going to sleep, maybe only for a half hour, or maybe longer but sayonara baby...lights out.  Yesterday morning felt a bit like that, getting up was a really a strange sensation of having weights tied around me, not usual for me at all.  But what you gonna do.

At 8:45 I was off to the appointment, armed with a bundle of nerves, heart palpitations and a credit card, what could go wrong?  Actually nothing went wrong, it was a good day.

A view from the parking lot.  In this building I've had the majority of tests, met with the fantastic staff of KP and have been ushered from the normal life to the cancer life.  Really a great new place, lots of light, very clean, certainly a place I won't forget anytime soon.  This is where my treatments will be held.  The walk from my car to the entrance was really a piece of cake.  I don't mean physically but mentally.  There have been times when walking toward this building entrance felt like my shoes weighed 50 lbs a piece and I couldn't bare the though what the next test would be, but not today, today was a day of action and I really wanted to get the party started.

If you ever see this sign as part of a doctor's visit here's a hint...your life is not going as planned...get ready for the curve ball.  Behind this door is my next 12 treatments, 6 months worth of highly trained, professional and wonderful folks trying to kill my cancer and keep me alive in the process.  I will be receiving 6 rounds of ABVD (I'll explain this next week) then hopefully be cured.  My oncologist says there is a 80-90 percent chance for a cure, not too bad as far a cancer goes.

The room is really pleasant  with a fantastic vies of the Rocky Mountains, but believe me, it ain't no social club, there is really serious life saving business going on.  What really make it is the incredible staff of nurses, pharmacists and doctors that see you through this.

Ah yes...my "little bastard" tapped and ready to go.  Got to admit, the whole port fiasco may give way to a really good way to put chemo into you.  No issues what so ever, it will still send my heart into palpitations every so often, but overall not bad.  

Chemo meds and the machine that delivers it.  These meds need to be delivered at really specific rates to prevent heart and vein damage.  The machine on  the right meters the flow so my last med, which needs to be infused over an hour period, does not get infused improperly. My first two meds were delivered by a syringe into the eyeball.........just kiddin' they were put in through the iv connected to the port. 

Sat in the chair by 9:45 am, was walking out around 12:45 pm, next time it should only take 2 hours.  Now for a couple of symptoms.

On the way out, I stopped at the pharmacy for some meds, mainly anti-nausea stuff.  While the order was being filled, I went outside to call my wife.  It was a great day, 40 degrees, incredibly blue skies and a light wind.  While talking I felt a small tingle around my nose and eyes.  Tingling in the location of an old Lone Ranger mask, then the tingling moved to my upper lip and mouth.  My first thought was I may be having some sort of delayed anaphylaxis reaction, then BOOM it hit me.  The feeling went from tingling to a thousand red ants being thrown on my face, I needed to get out of the cold and fast.  As soon as the old cheek bones warmed up inside all was fine, it was just a reaction to the cold. 

My extremely "unedumacated" and google induced guess is that it is some kind or neurapothy where I become hyper sensitive to heat and cold.  No doubt the nursing staff will be thrilled with my excellent self diagnosis.

All in all a good day.  Next week I hope to update you on the actual treatment, that is if a mountain lion doesn't get me.  Thanks JohnL.