Paul's Heart

Life As A Dad, And A Survivor

06 Jan 2013

Don’t Touch That Thermostat!


There are two things that a cancer patient wants to hear after being told “remission”, enjoy your “new normal”, and you’re never really done with cancer.  But we get detoured when we hear the word “remission”, our thoughts do not go towards new normal, but rather a mythical 5-year mark.  Decades ago, you were considered a low enough risk, if you had been in remission for five years.  Coincidentally, around that time, is when I lost contact with my doctors.  And of course, when we are told it is gone, we want it gone.  It is hard enough to look over our shoulders not just every day, but every minute, “is it going to come back?”

Today, I want to talk about that “new normal”.  Decades ago, the “new normal” was never even mentioned.  As a cancer survivor, you were not expected to live long enough to have many things, late effects, a future, and barely any time to develop a new normal.  But what exactly is a new normal?

Several years ago, patient support groups started throwing the term “new normal” around.  It was meant to imply a brand new beginning of your life.  Perhaps it was a chance to start over.  Maybe you would have a chance to “do over” and correct mistakes that you felt that you have made.  The new normal was about what you could and could not do.

Later, Doctors would catch on to this motivational tool, to help their patients gear up for the return of life as patients get back some resemblence of control.  Two days ago, I learned this concept of “new normal” perhaps goes much further than that.  And I would argue, that without looking and recognizing this idea, it will be impossible to find a physical new normal as so many, including myself, struggle to do.  So, from the advice of one of my doctors…

How often in your home or office (or other work environment) have you had a disagreement on temperature settings on the thermostat?  Too hot!  too cold!  Every one takes their turn at setting the thermostat to what they think is the correct temperature.  All the while, because everyone is giving their input by adjusting the thermostat, the system is never given the chance to do what it needs to do, to provide the comfort level that the thermostat is set for.  No matter if the area is the size of a living, or a warehouse floor, if you have the thermostat set for 75 degrees, but it is currently 76, instead of waiting for the temperature to drop one more degree, you adjust the device to 73 or 72 because there is no way that just that one degree will make it cooler as it needs.  We expect the thermostat to adjust to us, not the other way around.

The first stage of the new normal works like that as well.  In order for us to reach the physical new normal, we have to reach the emotional and mental new normal first.  So using the thermostat as the example, you, the patient are the thermostat.  Your family or your co-workers are the ones who are constantly trying to get you to change the air temperature and never give you the chance to do so.  When someone close to you does not understand that today might not be a good day for you (either physically or emotionally), how often do you go out of your way to accomodate everyone else.  Frequently adjusting the thermostat to get comfort, just because it is not happening quick enough, is not normal.  Friends and family must, MUST, accomodate to us.  We are the thermostat.  They must give us the opportunity to work.  It does no good to force us anymore than adjusting air temperature.  Before our diagnosis, this behavior was normal.  Probably none of us would ever give anyone an opportunity to work or do something for us without accomodating us if we pushed.  This is normal.  But now, we have to live the new normal.  And it starts here.  Our temperatures have been set.  Put a box over that “thermostat” and lock it.  Do not let anyone else change the setting.

This is not going to be easy.  After all, how often have you been to a grocery store, in the checkout isle and there is a mother with a three year old child.  The child begins to throw a tantrum because it wants candy that has strategically been placed in the isle for impulse buying.  If the mother gives in, she actually encourages that child to continue that behavior.  This is not normal.  But one day, she will grow weary of the tantrums and want them to stop.  She will be able to get them to stop, but only after time and effort, and patience.  It will not happen overnight.  But it will happen.  This would be the new normal for the mother.

Once you reach this level of new normal, the physical new normal is much easier to deal with.   I never got this advice until this past week.  I am a survivor of cancer for over 22 years, heart surgery for over 4 years, and various other physical issues.  I have struggled to find my new normal, but as I come to realize, I was only trying to achieve the physical normal first.  I need to have the emotional new normal first, and the rest will fall into place.

Welcome to the new normal.

Posted in Cancer, The Heart | Leave a comment
06 Jan 2013

Hodgkin’s Disease – In The Beginning


Four words in the form of a question I always get asked,  “How did you know?”

Up until my 22nd birthday, I had really only ever had one experience with cancer personally, and that was my Grandmother.  She had beaten breast cancer and was doing well.  The only other mention of cancer, was hearing that someone had died from it.

I was engaged (to my eventual ex-wife) with a little more than six months to go until the wedding.  There was not any feeling that something was wrong.  It was rare that my doctors would ever see me other than for an annual shot to help me deal with seasonal allergies.

It was just by chance that I had reached my hand up to the back of my neck to scratch a spot that was not really all that itchy, just enough to get noticed.  There it was, just two inches below my left ear, a huge lump about the size of an inch in diameter.  For the life of me, I swear it just popped up.  I never noticed it before.  But it was not normal.  So, I went to the doctor.  He felt due to its location, it was not a concern, probably a swollen node from perhaps the common cold.  Given the title of this post, I am sure you must be thinking “what kind of !@#$^@&#!!!! doctor was seeing”?  Just hold on for a brief moment longer.

The doctor put me on Naprosin, which is an anti-inflammatory, which actually did the trick and reduced the node in my neck.  But alone with the prescription, he did not want me playing any basketball or volleyball, really nothing athletic to give my body enough rest.  Odd orders for something compared to the common cold.  But once that was done, I went full tilt trying to get my body back into the swing of activities, exercise, weights, and of course, the games.

Almost immediately, I developed a very wierd painful tightness under my left arm when I extended it.  I cannot explain it, but I was upset with my doctor over all this, that it must have been his fault that ordering me rest for those couple of weeks made me susceptable to an injury.  So a co-worker had recommended that I go see his doctor who was pretty good at dealing with injuries.

I was only there briefly when he recommended seeing an oncologist.  I had no idea what that was, but agreed to go see it.  Upon entering the office, I still had not idea what discipline of medicine it was, but with all the fancy equipment, there is no way this was any simple office visit.  The doctor, who resembled Jeffrey Goldblum as The Fly, had barely walked into the office I was put in, not an exam room, not even shaking my hand, and begun to tell me about Hodgkin’s Disease.

HOLD ON A F*CKIN MINUTE!!!  Hodgkin’s Disease?!?  I had heard of it, not sure how, but no, no way.  I had a sports injury.  He obviously has me mixed up with someone else.  I was ready to bolt out of the office, but somehow he convinced me to at least an examination, which I conceded to.  Of course, then for whatever reason, he explained he need to… well… take his finger and go where no one has ever gone before.  When I protested and questioned the reason, he said to check for blood in the stool.  To which I warned him that the only blood he would see, would be his own if he attempted it.  So he does the digital, and now I cannot figure out which has me pissed off more, going in my out door or trying to tell me I had something bad, real bad.  He insisted on investigating the lump in my neck, which had resumed growing.  I said that I was there for my sports injury, not my neck.  He wanted to do a biopsy.  I wanted to do a quick exit.

So, six second opinions later, the final by a sports facility who ruled out the sports injury definitely, and then recommended that I get the biopsy done.

Within the next two weeks, the biopsy was done, and the preliminary diagnsosis was made.  Hodgkin’s Disease, Nodular Sclerosing, stage of disease to be determined following further tests.

And how on earth did a doctor mistake cancer as a common cold?  Hodgkin’s is a very difficult cancer to diagnose, as far as recognizing it.  There was nothing in my bloodwork to offer any clue, and x-rays and CT scans were negative.  But it was noted in journals, that Hodgkin’s was often misdiagnosed as a common cold by general practitioners.

Posted in Cancer | Leave a comment
06 Jan 2013

The Happy Golden


When we first bought Pollo, he was 8 weeks old, this little ball of energetic blonde  fur.  He was a golden retriever, and from the time he came home, his tail has always wagged.  In the eleven years with Wendy and I, and eight years with our daughters, he has never been want for attention and affection.  All he expected was to be fed, have his stomach rubbed, and occasionally allowed to swim in the pool.  The tail always wagged.  Pollo is the first pet (and I hate to call him that at this point in our lives) that I have had for its entire life.  That tail.  On the other end, is the biggest smile a dog could ever have.  You have probably seen the greeting cards with the animals with the huge bulging eyes and exagerated smiles.  That is Pollo.  Even his groomer refers to Pollo as “the happy golden”, his tail never stops wagging and a grin that never quits.

A couple of weeks ago I wrote that our fine furry family member had fallen ill.  Rapidly increasing symptoms gave me just cause to take him into the vet for an emergency visit.  Pollo walked in on his own will, but something was clearly wrong.  He spent the next forty-eight hours there undergoing tests and observation.  I received a call early Sunday morning that his symptoms had cleared up and was good to go home.  It has been a long and emotional weekend, not great company for long distance visitors who came up from Viriginia to spend some time.

An exam room door opened and there was that smile and wagging tail.  He saw me and wants to come home.  And in that same moment, he collapses.  The vet reacts that it must be the slippery floors and he cannot get his footing.  I just wanted to get him home.  I got him outside, and walked him to the grass, collapsing every two or three steps.  The final time, as he lay, a puddle of urine appears from under his belly.  Something is horribly wrong.

We get him back in to the building, and x-rays and bloodwork are ordered.  We are approaching a very unwanted territory, “how much do we afford to go” with not having pet insurance?  Everything is coming back negative, but he cannot stand up.  We made the decision to talk him home.  If anything were to happen, he would die at home.  Over the next several days, we confined him to our den, not having to deal with any steps.  It looked so hopeless.  We had to do everything for him.  Put his feed and water bowl right under his nose.  Standing up without our assistance as a major goal, so far from where we are.  On Tuesday, I call our regular vet for his opinion.  Alright, I was calling him to see if he would consider euthanasia.  Pollo was getting better only barely.  We spoke on the phone for near half an hour,  but not one time did he ever mention putting him down.  “It’s going to take time to recover.”  It was hard to keep him confined to the one room in our house to prevent any further injury by slipping on our hardwood floors.  It was sad just to see him lay there nearly every minute of every day, unable and unwilling to do anything.  And so, from that moment, I put everything into making that dog get well.  I take care of animals for a living.  But now, my skills would be recheaching a value of reward to me that had no reason to be hoped to be seen.

Each day brought a new measure, eating, walking, standing, laying down, get up into a sitting position, lifting himself which he is now doing 75% alone.  I still get to hear his heavy sighs which means you know he is relaxed.  His tail at 12 years old still won’t stop wagging.  He is now trotting across the yard.  I have gotten so much time with my friend, Pollo.  We get to take walks again as he gets excited to see his leash.  I miss him when we go away which fortunately we don’t travel great distances.  To have him at the vet hospital for those few days left a huge hole in our house.

I am so thankful to everyone for offering prayers of hope and recovery, Dr. Wagner and Dr. Alvwerniri.  I am going to be spending yet more time with my “box of rocks”.

Posted in Animals | Leave a comment

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