Paul's Heart

How Did I Know Something Was Wrong?

We have all heard variations of survival of heart attacks.  The symptoms range anywhere from severe heartburn to the most excruciating pain.  My father and father-out-law both had very different symptoms with their heart attacks.

I had not had a heart attack, yet.  But according to the cardiologist, to emphasize just how lucky I was, stated “it wasn’t a question of ‘if’ you were going to have a fatal heart attack, but ‘when’.”  It was going to be a moment that could not be recovered from.

Wendy had a friend who was out pulling tomatoes in his garden.  His wife had just looked out her kitchen window.  She stepped away from the window to answer the telephone, and it was for John.  As she exited the back door to the garden, she was horrified to see John face down in the tomato patch.  He was gone.

While John’s health almost made it expected, as opposed to acceptable (overweight, smoker, drinker, high stressed), a heart attack came as no surprise.  On the other hand, I have a fairly youthful appearance, hide my gut pretty well, and internalize my stress.  I do not smoke and am not a big drinker.  Of course my diet is horrible.  But to look at me, no one could have any idea that I was a candidate for a major coronary event.  So, given my procrastinating nature, how did I know it was time to finally do something and how close did I cut it?

I didn’t.  It was just dumb luck on so many levels.  I had one main symptom for four months, but because of the way it appeared and resolved, and the lack of severity, I thought nothing of it.

January 2nd of 2008, I made the resolution I have made every stinking year, and broken, to get into shape and drop some serious weight.  There was nothing in particular that led me to believe that 2008 would be any different in commitment, but nonetheless, I signed up in another gym, one that had not seen me yet, paid my enrollment fee and got to work right away.

It was only going to be a little bit of cardiac work and some weights.  I do not like to run, and exercise bikes are boring.  I found myself liking a machine called an eliptical.  What made it better, is it had all kinds of meters on it from measure calories burned  to heart beat.  It was real easy to set goals.  However, right from the first day, something did not feel right.  I clearly had no idea what I was doing as I watched my heartrate escalate rapidly and hold around 150, which amazingly I did not realize was not good.  The coding on the console stated that to properly burn calories and lose weight, I was in the correct heartrate zone.  If you have ever tried to go jogging or running in the cold, and you ever got that “tight” feeling in your body, well, that’s how I felt, only I was indoors in a climate control environment.  Within a minute, the tightness would disappear.    The difference between the feeling that I had, and the “jogging in the cold”, is that after a certain period of jogging, the body would normally aclimate.  After two months, this tightness did not go away.  But I started to notice this tightness in other activities.  I had a very physical job that required me to move half ton equipment.  And I got that tightness moving that equipment.  As daylight increased, I began to do outdoor work and experienced that tightness outdoors.  Each time, as if it were an introduction or an announcement, this tightness came on almost immediately by the third month, and also increased in intensity.  The tightness still only lasted approximately one minute, then disappeared.  At the gym, I simply went crazy on the eliptical for another fifty-nine minutes, and then it was off to the weight room.  At work, I continued to put out the amount of work as I always had.  Outside in the yard, I would find myself frequently doubled over in discomfort.

By the second week of April, I had enough.  I have seasonal allergies and Spring hayfever season was about to come on, so I figured why not give my doctor a call to set up an appointment for my allergy shot, but then also to address this tightness issue.  My health file after 42 years was ridiculously thin.  With the exception of the period that I battled Hodgkin’s Disease, I only saw my doctor once a year to get that shot, and that was it.

But as I asked for advice from Dr. P for any tips to get rid of this feeling, she made a decision that would be the absolute difference in my life.  On a hunch, based on my health history of cancer, she ordered a nuclear stress test.  A nuclear stress test is the same as a standard treadmill stress test, only the patient is injected with a dye, and then a special x-ray is taken before  getting on the treadmill, and then with the heart under stress and getting off of the treadmill.  The entire time, I was connected to an EKG machine monitoring my heart.

I took my turn on the table, and the first set of photos were taken in a relaxed state.  Then I got on the treadmill.  Within two minutes, the incline and speed had been increased, and it was obvious that my heart rate had also increased.  Into just the third minute, something had shown up on the EKG, and the test had been stopped.  Back to the x-ray machine, and the stress photos were done.

I honestly believe that as my cardiologist put it, that it was not a question of if I was going to die, but when.  And had it not been for my family doctor making the phone call to schedule the appointment for the nuclear stress test, and had I made the appointment on my own, that test most likely would not have occurred until weeks later, and then it most likely would have been too late.

On April 16th, I had a catheterization done, because the cardiologist thought he could fix me right up, with just a couple of stints as the pictures had shown there was definitely a blockage  as blood flow had been cut off from the heart.  But catheterization would not correct my blockage.  On April 17th, I had life saving emergency bypass surgery.  So no, I do not know what it is like to have a heart attack, and I am grateful that I do not.  But I need to learn to listen to my body when it gives me a fair amount of warning.  I am currently on my second folder of medical records as the first folder grew past its seams just since I finally dealt with that annoyance over four years ago.

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.

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.