Paul's Heart

Life As A Dad, And A Survivor

Things My Daughters Have Seen

I have close to 300 stories “prompted”, just sitting in limbo. I decided to just go back to the oldest one sitting in my cue, and see if I could finish it. To my surprise, I had only the title started with a note on the topic, referring to things that my daughters have witnessed during my survivorship of Hodgkin’s Lymphoma. As it turns out, this post actually connects to something that just happened recently.

My youngest daughter was applying for a specific scholarship for her first year of college next year. She was doing so from a unique perspective as the topic dealt assuming it was the applicant herself who the essay would be about. The subject dealt with dealing with cancer, how it was overcome, and any impact on her life. My daughter has never had cancer, and I hope with every fiber of my being that neither of my daughters ever have to face cancer. But cancer has had an impact on her life, her entire life.

Obviously neither of my daughters were even thought of when I dealt with Hodgkin’s Lymphoma back in 1988. As they grew, and learned of the word “cancer,” there would be occasional small, appropriate conversations about “what their Dad went through.” It is always a difficult thing to decide, what and how much to tell a child about cancer, of course depending on age. Up until 2008, just having started school, both of my daughters were already sharing in classroom discussions that their Dad was a cancer survivor. They even knew the specific cancer to bring up. But the limited knowledge was by design.

As my daughter began to conceptualize her scholarship essay, on how cancer has impacted her, it opened a very uncomfortable door for her. Up to this point, we have never really talked in great detail about my health events that occurred due to the late developing side effects from my cancer treatments. All my daughters really cared about up to a certain point, was that Dad always came home. The details were kept to a minimum, the part of the body effected, and that it was fixed. But now nearly fourteen years later, memories of what she witnessed, and details of what actually happened, and could have happened, finally came to light. My daughter finally learned how close, several times, that she came to losing me.

The essay was not just about the actual events of what had happened to me each time, but the disruptions of her routines, the need to change plans, someone other than her mother or father having to pick her up from school, and all too often, what the inside of a hospital looked like. There were times that I was “not at home,” sometimes for days, as I was in the hospital, no explanation given just “Daddy will come home.”

But as I have one daughter of adult age, and the other almost, it has become important for them to understand what has happened to my body over the years, and what potentially lies ahead. This scholarship essay was finally the opportunity to discuss and reveal the unknown for them, and come to learn, contrary to what they had been told by some of their family members, that their Father has some health issues of great concern.

And so we began with the big one, my first heart surgery. This could have easily been the end, in reality it was just the beginning. In the “I was going to die” episode number one, my younger daughter aged three at the time, was finally told that I had what was nicknamed a “widow maker” blockage of my heart. At first there was confusion for her, because she knew what the word “widow” meant, but somehow this would have resulted in the death of her mother. After clarifying for her, she learned what I had been told by my cardiologist back in 2008, “it was not a question if I was going to die from a fatal heart attack, but when.”

Both of my daughter had childhood friends who lost their Father at a young age, also due to cardiac issues, but not cancer treatment related. My daughters could not relate to their young friends what it was like to have to visit their Father’s grave, not to spend holidays with their Dad, or do things with each other. My daughters knew their friends’ Father was dead, but the children really never let on, that it affected my daughters any further than the knowledge.

But now, as my daughter and I were on Facetime working on this essay, the potential loss of her own Father became a reality to her, of course not wanting to find out what it was really like, as with her friends.

In 2008, I needed to have an emergency triple bypass, that was downgraded to a double bypass (a big mistake later realized in 2019). It was the first time that I was ever away from my daughters. It could not have been under the worst possible circumstances. Again, faced with the “what and how much” do you tell a three and five year old, they were told that I was just staying overnight somewhere, and I would be “fine,” the first of many times my daughters were deceived about my health, and not by me. Four days into my recovery, still in the hospital, my daughters were brought in to see me. I was still connected to machines, and had at least one hose still coming out of me. My older daughter was not intimidated by anything, and quickly came to the upper part of my hospital bed, encouraged to go easy, that I had a huge “booboo” in the middle of my chest. However, my younger daughter, was clearly frightened and upset, having never seen me laid out like I was. After about a half an hour, she found her way, nestled against the left side of my upper body. Her excitement when I finally came home could not be contained.

My older daughter remembers most of that time period, my younger daughter does not. But now that it had been discovered that I had other issues related to my treatments, there would be more time away from my daughters,

In 2010, my daughters were confused when their “Poppop” was picking them up from school. I honestly do not know what they had been told. I was being rushed to the hospital, bleeding, and in extreme pain.

Then two years later, and for the first time, an episode occurred that my younger daughter is able to remember. At 3am, I was being rolled out of my house on an ambulance stretcher, screaming in intense pain, just having had a bout with uncontrolled vomit. I do not have many memories of that night, as I am pretty sure I was hallucinating. But as the paramedics rolled me out of my bedroom, there at the top of the steps, were my daughters, then aged 7 and 9, wide awake in their pajamas, standing next to a police officer who was assisting the emergency.

My daughters were never told how serious this situation was. But according to my doctors, I was dying from sepsis. My doctor, expressing frustration with me, chided me, “with as high as your lactic acid levels were, you were septic likely for at least 48 hours! What the hell took you so long to go to the hospital?” A lactic acid level of 4mmol/L is indicative of a sepsis infection. And at that level, the mortality (a.k.a. dying) rate is near 30%. I pleaded with my doctor, I felt completely fine when I went to bed that evening, other than being a bit exhausted from the hectic week I had just gone through. Unknown to me, I had developed a form of pneumonia, called “aspiration”. Unlike other pneumonias, following illnesses, aspiration pneumonia is brought on, by inhaling food, saliva, or stomach acid into the lungs. For the purposes of this post, I am not going to get into the technicality of this episode, but this event was brought on courtesy of late effects from my treatments.

I would have a relapse of aspiration pneumonia nine months later as doctors tried to figure how to deal with my esophageal issues causing this. But again, my daughter was hearing for the first time with this particular event, I had almost died. But again, some around her continued to blatantly lie to her, that nothing was wrong.

As both of my daughters got older, I continued to have health issues pop up. But now being divorced and not living in close proximity to them, and due to the complexities of custody, my daughters were no longer told when I had these extreme situations come up, for fear that my health would somehow get used against me in court to prevent me from seeing my daughters, and it did come up on at least two occasions, fortunately being ruled in my favor.

Just as the pandemic hit, I had to have two more major surgeries, that I felt needed to be kept from my daughters, for fear of being misrepresented by those close to them. They would only hear about them when I had recovered which of course only reinforced what they were being told, “your Dad is fine.” But a little over a year ago, I made the decision, as I said, with them getting older and needing to know, I let them know of my third heart surgery having to be done. And being apart from them, unable for them to be by my side in the hospital, courtesy of technology, I was able to Facetime them from the ICU, that they could see where I was, and learn what had been done. And I could see for myself, that they were at ease.

But it was not just medical events that they were faced with when it came to me, my daughters could actually see the toll that my cancer survivorship had taken on me over the years. Just a simple walk in the snow, would leave me gasping for air. I have lost the mobility of my shoulders from radiation damage, my daughters now “wrestle” me to assist dealing with their luggage when they come to visit. I know my daughters “get it.” They have been told most of their lives, by certain family members, that there was nothing wrong with me, that I was fine.

Now, as my daughter writes her essay, we both now understand how my cancer has impacted her life and will impact her in the future. As parents, we struggle what and how much to tell our children when faced with health crisis. And it becomes difficult when their lives and activities are impacted, and cannot understand why. This is why I encouraged her to go for this particular scholarship.

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