Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

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

Well Read Or Do I Just Know Too Much?


You go to a doctor with a sore throat, a cut that needs more than a bandaid, or possibly recurring headaches.  When the office visit is over, hopefully you have gotten your diagnosis or treatment, and you are on your way to recovery.  But what happens when you are dealing with an issue that is not common enough or is something that your doctor or nurse practitioner has not seen since Med School?  Hopefully you are not brushed off with a “general” diagnosis and told to give it time.  If you are lucky, your doctor will refer you out to a specialist.  But even that is not a sure thing because your doctor does not know what is wrong with you, how will your doctor know what specialist to send you to?  And going to the wrong specialist will only continue the torment of “we really have no idea” and again, the cycle repeats.

The world of the long term cancer survivor turns just like that.  Looking at me, I appear like a typical 46 year old male.  Listening to my day’s activities, there is nothing that stands out to anyone.  But a couple of decades ago, I made a choice to undergo radiation and chemotherapy treatments so that I could survive cancer.  Normally, a side effect is something you experience while you are taking a treatment or remedy.  After all, when you look at the bottle of medicine, or watch the commercials, you get the information on “possible” side effects.  But there is a difference between short term and long term.  What you see on the bottle and hear on TV is short term.  These are the side effects that are known and must be revealed according to FDA regulations.  This way you know the risks involved with your treatment.

A little known fact?  Not all side effects are listed on the bottles or stated in the commercials.  This does not mean that they do not exist, but if the number of patients is so minimal, the side effects may not be required to be publicly stated when advertised.  But God help you if you develop one of those side effects.  Again, because it is not the obvious, a patient has the possibility of not being taken seriously.  And this is a mistake.  Sometimes, it can be a fatal mistake.

Then there are those side effects that do not happen for a long time.  Do you recall Three Mile Island or Chernobyl?  News programs raised the risks of lingering effects by simply saying, who knows?

With cancer, it used to be that patients were not expected to live too long after their remissions.  In fact, a mythical mark of five years to this day, is still a goal that survivors strive to achive because now, so many more people survive cancer longer than that.  And the longer you went past five years, the better your chances for survival.  With the good comes the bad.  Researchers never really researched the long term effects of radiation, chemotherapy drugs, and even surgeries (such as splenectomies).

When you go to the doctor for the flu, or a broken arm, you are followed up by your doctor until your deemed cured or healed.  After that, you are on your own.  Up until recent years, cancer patients were treated the same way, and it definitely seemed tied to the “5 year mark.”  Whether short term or long term, side effects need time to develop.  If you get nausea while taking an antibiotic, you complain about it, and perhaps something different is prescribed.  But this is only by diligence by you or observation of your doctor.

But what happens when you are exposed to all the toxicity, hazards, and challenges brought on by your cancer diagnosis and treatment, and you are not followed up on?  We all know, the sooner you catch something, the better, right?  That is the way it worked with my Hodgkin’s.  It was caught early.  But over the years, I had no idea that my body has been failing.  My cardiac system, respiratory system, muscular, spinal, and the list goes on, have all been affected.  Again, on the outside, I look like a normal 46 year old, and any doctor who were to look at me, or listen to a concern, would treat me that way.

But because of my ails over the years, I have learned so much about my health, my long term side effects.  My primary care physician relies on me to “teach” her this “new” medicine.  You cannot correct an irradiated heart like you would a normal abused-by-yummy-diet hearts.  A doctor who is not trained in these late effects (see other posts of mine under “Hodgkin’s Disease – Side Effects) who happens to stumble on my bodies ill effects, can find themselves in trouble, leading me to be at risk.  But these are things that I have learned over time.  I possess all records pertaining to my cancer past, and everything that has occurred to me since.

But the time does come, when I must deal with another ER doctor, express my latest concerns, trying to convince them that I am not a “typical” case, and again, when they cannot figure out what is causing the latest symptoms, in spite of my assertions, I hear “well, you are very well read”.  So on top of what is making me ill at the present time, the doctor-de-jur feels that I have planted the crisis in my head, “well read”.

Yes, I do know a lot about the human body, especially mine.  I know about everything that has been done to me.  I know of most of the risks to me from my past.  I question the risks that I am put in trying to correct new diagnosis as they come up.  But nothing is more frustrating, and perhaps risking mortality, than to just consider me “well read”.  Another term that gets tossed around like “well read”, hypochondriac.  Truth be told, I would rather be a hypochondriac.  And as each new issue is brought up, I breath a sigh of relief, that the right person listened to me, found my emergency alert bracelet, and my medical information cards in my wallet (what to do with me if I am unresponsive).

I will accept the term “well read” because that is a compliment to me that I know what I am talking about, I am knowledgable.  But I know what someone else might mean calling me “well read”.  I forgive you.

Posted in Cancer | Leave a comment

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