Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “January, 2013”

06 Jan 2013

Are You Out Of Your Mind?


Of course, the answer to this question is subjective.  But what would you do, if it was because of someone you trust, doing something to you, which was supposed to be for your benefit?

Up until the day before I found out that I needed to have heart surgery, I had been taking a certain regimen of blood pressure and cholesterol medication.  It was a combination drug called Caduet.  Much to my objections, I started taking this drug to finally reign in and bring down both my cholesterol and blood pressure.  But following the heart surgery, the cardiologist ordered a different regimen, which involved two separate drugs instead of the combination.  When I asked for the reason for the switch I was given the following answer, “this is what we always prescribe for our heart patients following bypass surgery.”  I had no reason to mistrust the ones who know that stuff right?

Following my release from the hospital, I was still in quite a bit of pain from having my breast bone cut in half for the surgery, but was unaware of anything else.  Any difference in mood or demeanor could be attributed to that, and during the first month or two of recovery.  By the beginning of the third month, something was clearly wrong.

High levels of anger developed, and with very little provocation, commonly called “rage”.  Coginitively I was beginning to fail in both recall and function.  Moments in time, gone with no idea of what transpired.  While my cardiac issue was related to my cancer treatment history, I now was pursuing the possibility of yet another treatment related condition, something called “chemo brain”.  Recent studies offered evidence that certain types and amounts of chemo had been proven to cause cognitive issues.  This clearly was going to be the problem.  The only concern with this theory, I was not this bad mentally before the surgery.

Fortunately, between my family doctor and the long term cancer survival doctors that I see, have real good ears.  They both are also very persistant.  I could have been E.F. Hutton, because when I spoke, they listened.  Multiple bloodwork and numerous scans had been done, all negative.  Finally, I was sent to neurology to one of the best doctors at the University Of Pennsylvania who rattled off some really intense cognitive testing.  But again, this ended up negative.  Something was definitely wrong.  Wendy felt helpless watching me struggle even to remember simple number combinations, pull onto highways without realizing oncoming traffic, and did not see someone walk in front of our vehicle as I attempted to pull out from a driveway.  The simple act of one of my daughters simply spilling a glass of water on the kitchen table was enough to set me off.

Approximately 10 years prior, my ex’s father-in-law went through a situation with his mental functioning.  Just by chance, I had caught his nurse giving him blood pressure medicine immediately after taking his blood pressure, reading of 60/40.  He was taking medication to lower his blood pressure and it was already too low.  Testing had revealed nothing, but clearly he had behavioral and cognitive issues which came on suddenly.  He was diagnosed with having Alzheimers and put into a nursing home, where he would spend 3 years in a drug-induced persona.  I am not sure what triggered it, but on one day, somehow, he had enough function to refuse taking any more medicine.  Even in his lethargic state, I believe he may have been contemplating suicide as he also was refusing food.  No meds, no food.  He went through violent withdrawals and lapsed into a coma.  Two days later his wife was faced with the decision to have a feeding tube placed so that food and meds could be given.  Just before the doctor came into the room, he woke up, clear as day.  He had no recollection of the prior three years, no idea where or why he was in the hospital.  Just like that.  I tried right from the beginning, and constantly fell on deaf ears to argue his medication was the cause.  With his recovery, I knew this was going to be the same problem with me.

Research would lead me to the University of California in San Diego and a researcher who studied mental side effects of statin drugs.  Ethically studies could not be done on withdrawing medications, so her work was based solely on people who had come off their meds on their own will for the most part.  Unfortunately, because of my health history, I was of no use to her as my body was clearly compromised from heart surgery and cancer history.  But the fact had been discovered.  Cognitive side effects had been discovered with Lipitor, but only in an amount that did not require obvious public disclosure.  The incidents were so minimal, hardly anyone even thought this could be the possibility with me.

On March 14th, 2009, I made a conscious decision to stop taking my Lipitor cold turkey.  What was happening to me mentally I felt was far worse than the risk of cardiac disease.  Literally, within three days, everything had cleared up, everything.  At that point, my doctors were faced with a challenge.  I needed something to help drive my cholesterol levels down, but I was never, NEVER going to take another statin drug again.  Unfortunately, multiple attempts with various therapies, I had no choice other than to take something again.  And since it worked before, with no obvious effects, I went back on the Caduet, same dosage as before.  Once again, my levels have gotten back to where they were before the surgery and everything has been going fine.

Today, I am more resolute than ever, that I will never take anything without extreme considerations.  Wendy has learned also, that at even the slightest hint of a behavioral change, react immediately before things escalate to having no control.  It is so important to realize that just because it has not been advertised on the television or the magazine ad, does not mean that a side effect has not been recognized.  Taking meds at regularly scheduled intervals or decisions on cessation are crucial and should not be taken lightly and without notifying your doctors.  Most importantly, you are not just the patient, you are part of your treatment team.  You have a say in what is done to you, and what you are recommended to take.  And now for the irony.  I mentioned that Caduet was a two drug in one combination for blood pressure and cholesterol.  The cholesterol part is a statin drug, Lipitor.  It is very possible that the issue was the dosage.  I went from 10mg to 40mg following the surgery.  All I know is that things are okay as they are, so I will never know.

Posted in Cancer, The Heart | Leave a comment
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.

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