Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

It’s Not Our Fault – It’s Your Body


There are now tests available to determine if you are at a higher risk for certain cancers. I have always felt uneasy about this “Pandora’s Box” opportunity because I am afraid of the emotional stress it can cause, a fear that may never come true, but take away so much. I know what it is like to worry about the “what if” scenario because as a cancer patient, I was told that certain things could happen to me as a result of the treatment options I pursued towards my remission. And then of course, there is the protocol that my doctors follow me as a long term cancer survivor, which includes all kinds of testing on nearly every system of my body, to see what is going wrong, heading in that direction, or nothing to worry about.

When I had my open heart surgery nearly six years ago, is when I became aware through the extraordinary screening, all the things that had the potential to go wrong. And I will be the first to admit, that the knowledge I gained, crippled me and took away a minimum of four years of my life as all I did was worry about what could happen. If you live in the past, or just look to the future, you are going to miss the present.

I am not saying that the cancer gene tests are not without merit, quite the contrary. I am a firm believer that the earlier you can diagnose and treat cancer the better chance at survival. But when those tests lead to such extreme decisions such as voluntary mastectomies, hysterctomies, and other omies, when an acutal risk severity has not been determined is unfair to terrorize patients.

Of course the cynic in me needs to recognize this “test” is not just about what is good for the patient, but what people do not realize, by being diagnosed with a pre-existing condition, up until the approval of the Affordable Care Act, that test, if confirmed, was a ticket for the insurance companies to deny you health insurance, and will still lead to denial of life insurance. If the test is definitely going to save your life immediately, then by all means. If it is just going to make your stomach turn each and every day, then it may need to be thought about more.

And it is not just with personal insurance that this discrimination occurs. It also happens with Worker’s Compensation Insurance. Insurance companies always look for exits for WC claims. But guess what? As long as it happens on your employer’s property, it is Worker’s Comp. There is no doubt you will be put through an emotional and financial wringer, but just because you have cardiac disease, if you have a heart attack at work, that is Worker’s Compensation.

We are born with our bodies. In our lifetime, we are lucky if all we have to deal with are common colds and other ailments. But what happens when your body has to deal with something that will leave your future health in question because of measures that must be taken to save your life now?

In 1988 I was diagnosed with Hodgkin’s Lymphoma. Strike 1. In 2008 I underwent emergency bypass heart surgery. Strike 2. But wait. The surgery was necessary because of treatments that I received back in 1988 for my cancer. Fortunately I had good insurance. Two bouts of near fatal pneumonia in 2012. Strikes 3 and 4. Restrictive lung disease. Cardiac disease. Radiation Fibrosis Syndrome. Osteopenia. My list goes on and on. But God help me the day that I lose the insurance that I have. Fortunately I do not have to rely on that statement anymore because of the Affordable Care Act.

I am not saying that it is perfect, but the one thing that it did do, was make sure that people like me, are not denied coverage, not only for something that just happened, but also for what was done to me. No longer does some pen pushing puke get to turn me down because I had cancer, or problems because of it. I have two daughters that I plan on seeing graduate from high school, and if they choose, to get married. I want to see them grow into adulthood.

I am not the only one in this situation. There are millions of other people, not just cancer patients who would have faced other dire circumstances if insurance companies were able to deny health coverage. In my last post, I mentioned about cancer not discriminating, especially by age. Millions of children are treated for any number of illnesses, and live long and fruitful lives. And they need that coverage.

Cancer Does Not Discriminate


Back in 1989, as I walked through the hallway of the 9th floor at St. Luke’s Hospital for the first time as a cancer patient, the first lesson I learned was that cancer does not discriminate. Whereas early in my childhood, and mainly because of stereotypes that cancer created, it seemed that only certain people were diagnosed, and died from cancer.

Within minutes, I would see the widest of ranges in age of patients, from as young as two, to patients in their eighties. I saw men and women, people of all ethnicities. I would be willing to be also, that it did not matter if you were a good person or a bad person. Short and tall, rich and poor. It did not matter.

It was after those first steps on the cancer floor, that I had it in my mind I was going to be my cancer, Hodgkin’s Lymphoma. But it also became a moment that would change my thought process. After seeing the various patients, and in their various states, from that moment on I no longer gave myself the opportunity to feel sorry for myself, to allow myself to feel or acknoledge any pain or discomfort, physical or emotional. Someone was always going to have it worse than me. My situation was going to be temporary. This was thinking was going to be an issue for the rest of my life, and it is, often in a horrible way.

You see, no matter what the pain or discomfort, it does not take away from the reality, that it is real. Your pain, my discomfort, someone else’s ail, they are all real, and all deserve the proper attention. Yet while for the most part, I appreciate being able to be referred to as a long term cancer survivor. But at the same time, my heart mourns for Jennifer (see Jennifer’s Story on this blog page), and now my heart completely mourns for Michael. My thoughts begin to be dominated by a three year old neighbor battling a cancer that just a few years ago, took my stepsister’s life with her second battle having survived the first time for more than 30 years. I worry about my dad who just turned 70 as he worries about his cancer surviving.

Cancer does not discriminate. And even if it did, I do not know if that would help to make sense as to the “why” it has to happen. All I know is that it hurts. Every time I must say goodbye who has come into my life, it hurts. That is why I participate in fundraisers like the Relay For Life, Light The Night, breast cancer walks. Money cannot be the reason that we continue to lose someone. We need to find the cures, for all cancers, and then prevention.

When Medicine Is Not Working


I am sitting in one of my specialist’s offices waiting for my turn, which is being delayed by the constant interruption of drug reps and insurance reps. And since I wrote yesterday that I would talk about medicines in my last post, I felt it ironic that everything is coming together at this moment.

My entire life, I grew up rarely taking any kind of medicine. When I do get sick these days, my family doctor is always amused that my body can probably get by with simple Penicillin because I have not built my immunity against all other kinds of antibiotics. Of course, that all changed when I was diagnosed with Hodgkin’s Lymphoma. At that point, I had all kinds of toxins put into my body. This was supposed to be a good thing. These medicines were going to make me better. That is what medicines are supposed to do. But what happens when medicines stop working?

I continued my record of not taking medicines following the completion of my cancer treatments. I believed that enough garbage had been put into my system. I experienced all kinds of side effects in the short run, and long term. Back when I was exposed to all of those drugs, potential side effects were not really discussed openly, simply as “matter of fact.” Today, you cannot escape the television commercials for long awaited hopes for cures to crippling illnesses only to have to face the disclaimers at the end of the commercial that warns of all kinds of horrible and potentially fatal side effects. After hearing most of the possibilities, I cannot for the life of me wonder why anyone would take that risk.

But I do not want this post to be about side effects, but more about what happens when the medicines are no longer working, yet we continue to take them, just because the doctors tell us to. Just a few years prior to my open heart surgery, after more than ten years of my doctors bugging me, I finally relented to take a simple drug called Synthroid to help me with a thyroid that was pretty much destroyed courtesy of my radiation therapy. My alternative would be to face a good possibility of thyroid cancer otherwise. Soon, other drugs would follow as my cholesterol got out of control, and after that, my blood pressure. Following my heart surgery, more blood pressure medicines, and then pain became an issue as various muscles and bones began to show their effects from the radiation and chemotherapies. But, the bottom line, they worked. Next to the pain I was dealing with, the biggest issue I struggled with following the heart surgery was insomnia.

I began taking Ambien, low dose to get me to sleep. Not helping, I graduated to the higher dose, but that too would not keep me asleep more than two to three hours. Then it was up to the controlled release, a pill meant to keep you asleep for eight hours. Just like everything else, it was not doing the job. To make matters worse, I was developing memory issues, and the first half of my days were pretty much spent in a “fog”. You see, Ambien CR can last in your system much longer than the eight hours it is meant to work. From my understanding, it can last up to twelve hours.

I have said before, I believe most medicines “mask” the ailments, in other words, they just treat the symptoms, not cure the cause. I believe medicine is just too quick to say, “here, take this” whether it be for depression, sleep, or pain.

Getting back to my Ambien problem, and that is what it was, a problem, because I was taking a pill to help me sleep, and it was not working. The trick was trying to find out why. It was not long until I discovered that it was the enormous amount of daily stress I was under. And once I learned to recognize and deal with my stressors, I was able to get to sleep, and without the Ambien. But another neat thing happened soon after. With less stress, I got more sleep, my pain levels seemed to get better. My body was finally getting the rest it needed. Do not get me wrong, I still have chronic pain, but it is easier to deal with because of increased sleep, and I have stopped pushing my body harder than I felt that I needed to.

As of today, I am now off all sleep medicines, and all pain medicines. I still have an occasional bad day, but I have more good days that I can tolerate them. The only pills I have to take are for my thyroid, and my cholesterol and blood pressure. I have already asked my doctors to consider taking me off of those meds, but to no avail. It is felt with my health history, I have enough stacked against me, and any preventative help I can get I should take. For now, I am still complying.

But when the medicines no longer work, why would I continue to take them? Exposing myself to long term risks and side effects and possibly addiction? My ailments are real, just as many others, and those ailments should be dealt with, not covered up by drugs that simply cover up the pain and discomforts. What is causing the issue, and deal with that, not just the symptoms.

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