Paul's Heart

Life As A Dad, And A Survivor

Children First


I just spent a wonderful weekend with my daughters visiting a close family of ours that adopted with us nearly ten years ago. My daughters are Chinese and one thing I believe in is keeping them involved in activities that teach them about their culture.

But as I wait for my divorce to draw to a close, the weekend away also gave my daughters a chance to forget about what has been going on at home between their parents. I intentionally do not discuss the details of the pending divorce for many reasons, but mainly for the fact that the ones who will be hurt, will be my children. As one person decides to carry on a conversation about what they heard, to another, details start to change, and not for the better. The average divorce process does not need any help getting more tense and hurtful.

My children are my main focus in this process. At one time, I referred to my ex and I as “the best of both worlds” in parenting. Their mother was the soft and cushy parent, while I was the firm and safe parent, consistent. For the longest time, this worked. And during a recent medical emergency, in spite of our current differences, my youngest’s mother and I were given a stark reminder that there was still co-parenting to be done, as we discussed treatments for her visit to the ER. And we did it. For those few days, we put our differences aside, and helped our daughter to recover.

I want my children to be allowed to be children. I have done my best to make sure that they do not witness any discussions between my ex and I. But that does not protect them from innuendo and rumors spread by others. To think I felt frustrated when my children went from one of us saying “no” to asking the other parent in hopes of that parent saying “yes”. I am certain that our two different parenting styles will be coming forward now.

But for a weekend, I gave my daughters something that they do not often get anymore, an opportunity to have fun, and to just be kids again.

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.

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