Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Adoption”

Progress – Not Everything Is Easier


As a patient, no one can appreciate progress more than I do. Treated with some of the most extreme therapies, while I have survived decades, it has come at a cost in late developing side effects. Patients today, are now treated with better and mostly safer methods. As a consumer, it is easy to scratch our heads at all the new gadgets and vehicles and the options and purposes of the newer technologies. I can still recall many years ago, introducing my grandmother to her dishwasher, microwave, and VCR and the frustrations she had getting along in modern times.

As a parent, I have had different experiences that have caused this particular moment of reflection. As the northeast part of the US got walloped with snow, disappointment abounds for students, as this occurred over a weekend, meaning that the conditions would be cleared up enough for the start of school tomorrow. BUT, had this storm’s timing been a bit more perfect, it would have occurred overnight last night, leading to delays and closures for school.

In the old days, okay, when I was a kid, we found out about school closures on the television, watching a “ticker” (a running announcement on the bottom of the screen, now commonly used on many channels for extra content to be displayed). With our television stations located in Philadelphia covering many suburbs, it would mean that there would be a long list of schools to wait for, to see if my school had made the cut. Fortunately, it was in alphabetical order, but with the number of schools, it could be at least ten minutes until the ticker got back to the “A’s” if I did not get to the television quick enough. This was the only way that we found out if we had a delay or cancellation.

But as a parent, now we have the internet, where the school district announces delays and cancellations right at the top of their web site. Wait, there is more. There is also an automated phone system that now contacts families. Need more? Sure. An app that sends a text message directly to the cell phone, all the while everyone continues to sleep, just in case there will be extra time to get some shut-eye. No more waking up an hour early just to watch the television, possibly to be disappointed in no delay at all of school. Geesh, I wish I had studied the night before.

Nowhere have a seen more progress though, through the eyes of a parent, than that of dealing with school procedures and future planning. Just as a reminder. The microwave, heats up food quicker. The VCR, lets you see television shows while you are away. GPS has saved so many trees no longer needing 50 pages of Mapquest to navigate vacations.

But as I have learned with my daughters, some progress might actually make things more complicated, at least that is, as the Progressive insurance commercial says, “we become our parents.”

The first taste I got of this newer process was as soon as my daughters entered middle school. I no longer remember the name of the app used to enter class selections because that app is no longer used, and now there are at least three more applications that students must use. Here it comes, “why back in my day, we got a booklet with all the course descriptions, and we wrote down what we wanted, then handed the paper in.” Yep, became my parents.

The app being used, actually follows the student their whole middle and high school years, and actually keeps a tabulation on the number of credits necessary to complete their education.

Whereas I had a guidance counselor that was there to help lead me in my future path, there is an app that has you complete surveys and questionaires that now pick your best choices for vocations, so that you can pick the best education path to achieve that goal. Not sold on how accurate this method is given how fickle teenage minds can be.

Don’t get me started on the additional standardized testing by individual states. In my former state, there were actually two, that provided requirements of certain scores and status, in order to graduate. Me, just had to pass the final exam. Sure, I took the SAT’s. But those were not required to graduate.

Another app gives grades and sends out school announcements, and most importantly, processes that need to be taken care of in junior and senior years, in order to meet graduation requirements.

Okay, this is one thing that is definitely a great advancement, the college application process. There are apps for both the college boards which aid in the application process, from submitting SAT scores to the application itself. Back in the day, we actually had to submit an application, along with an essay, through the mail to the school. Today, an app allows you to simply just “add” other colleges to just one application attempt (as long as the college participates), aaaaaaaannnndddd, allows you to even submit the same essay. Kids today, so spoiled.

As I enter this next chapter with my daughters, I often find myself scratching my head, trying to keep up with the newer technologies that my daughters have no problem following. One thing I do know, as this process goes on, I am actually seeing one step further and the progress as they approach the next chapter of their lives.

Then the hard part really begins, letting go.

What’s In A Number?


This is a boring meme that showed up across social media in recent weeks. I do not usually reply to these things, especially the ones that pretty much end up being password related. But admittedly, this one did kind of have me curious.

I am recognizing a birthday today. I do not celebrate them anymore, I just let them happen. I prefer no fanfare. The truth is, I consider myself lucky to still be here considering everything that my body has been through, due to the treatments that saved my life from Hodgkin’s Lymphoma over 32 years ago.

But I decided to give this one a go, just as a lighter post. Of course, when the meme came out, as I was at the age of 55, flipping the numbers did nothing. I remained 55 years old. Boring. And now I am heading into the upper half of my fifties. To be honest, nothing would thrill me more than to be on the lower half of this decade of my life, to get another crack during those times. I thought it would be interesting to reflect back on those younger decades.

I will skip my 5th year of birth, as I know there was nothing remarkable about my first year in school as a kindergartener, except that I was small, and some remark “oh how cute!”. Apparently, I was also a blonde.

At 15, I switched high schools. While it was somewhat intimidating, the opportunities given to me at my new school, allowed my life to take much different paths than what I had been going previously and I definitely do not think things would have turned out better. I will always remember the new friends that came into my life, as I am still friends with them today, more than forty years later.

At 25, I was beginning my life as a cancer survivor. That year was filled with constant fears of my cancer coming back. Wanting to move forward with my life, I got married to my fiance who had stood by me during my battle with what was called back then, Hodgkin’s Disease. I had resumed working. I was ready to get back to some sort of normalcy.

Age 35 was a transition year for me. My first marriage had ended, devastating as I had so much wanted to have a family, and this would likely reduce the chances of that happening. (spoiler alert – a second marriage not in my “five” years, I would end up blessed with two amazing daughters)

I experienced my first and so far, my only kidney stone at age 45. I had been put on a calcium supplement to deal with one of the late side effects from my cancer treatments, for a diagnosis of osteopenia and facet joint arthritis in my lower back. This was discovered during a medical work up for long term cancer survivor health issues, discovered in 2008, when I had to have emergency open heart surgery (see “CABG – Not Just A Green Leafy Vegetable). And yes, the pain of that large kidney stone, was worse pain than that of my open heart surgery.

55 is an interesting year as it has been somewhat uneventful, well, perhaps better described as par for the course as I dealt with two more issues related to my treatments. But, as usual, I have gotten through both.

Aside from that, 55 has a much darker cloud looming over it. On my father’s side of the family, longevity is not in our genes. Of my father and his four siblings, only he and his one brother lived past 55, both making it to 70. Ironically, as my father lay dying from lung cancer, he actually said, “all I want to do is make it to 70,” and he did, just like his brother. But the other siblings, and his mother passed away in their late 40’s and early 50’s. This alone rents enough space in my head as I have hit this milestone of 55, and then, factor in all the trauma my body has gone through health wise since 2008, a lot. I do not have good longevity odds.

So yes, I recognize my birthday each year. It is hard to celebrate, when I know the odds of a next birthday get harder and harder.

As I turn 56, let’s flip that number. I would be 65. Why is this number significant to me, besides approaching retirement age? Besides being only the third in the last three generations to reach this age, there is a bigger plan. And it is this plan that drives me. I want to get to age 65.

My doctors who care for the multiple health issues from my treatments concede that they cannot reverse what is happening to my body, and they cannot stop them. There are some issues that can be slowed down, and some that can be repaired, albeit temporarily (needing to be fixed again later on). But knowing about these issues, is half the battle. Dealing with them is the other half of the plan. And that plan is this. I want to see my daughters grow into adulthood. I want to attend my daughters high school graduations. If my daughters choose to go to college, I want to witness their graduations. If my daughters choose to get married, I want to walk my daughters down the aisles. And my final wish, would be to hear the name “grandpa” or whatever my daughters would have their children refer to me as. This promise had been made to me over 13 years ago, and I now have one daughter graduating from high school this year, and the other next year. If I have my way, and keep my attitude, my 65th year will be my greatest.

In all honestly, I do not expect to see 75 or 85, definitely not 95, whether genetics or cancer survivorship issues. But I seriously want to get to 65. It is not going to be easy as I know I will see at the least, several more surgeries, and likely additional diagnosis. I am okay with that as I am living each day, the best that I can, no regrets.

This was a hell of a writing prompt my writing coach would have been proud of. I miss having her weekly prompts. This was fun.

What Do You Want For Christmas?


“What do you want for Christmas?”, or since my birthday falls a week before the big day, “what would you like for your birthday?” In my childhood days, I had no problem rattling off things that I would like to have for both occasions. In my adulthood however, nearly all of it, my answer has always been simple to me, frustrating to others, time.

I love this quote from John Lennon. Asked what he wanted to be when he grew up, Lennon answered simply, “happy.” When I get asked what gifts I would like for either a holiday or my birthday, I answer “time.” Happiness was important to Lennon. Time is important to me.

I stopped longing for material things at the age of 22, when I was diagnosed with Hodgkin’s Lymphoma. Things no longer mattered to me. All I wanted was simple, more time. All I knew about cancer, was that people died from it. As I reached remission, my feelings never changed. Survivorship became about making a magical “5 year survival mark” as if any time after that did not matter, because it rarely got discussed.

But as my survivorship term increased, now by the decades, there is also a reality, and only reaffirms the only thing I want for these special occasions. Treatments that I went through to put my cancer into remission, over time, have caused, and continue to cause cumulative damage. I have had three heart surgeries, a surgery to repair my carotid artery, and two episodes of aspiration pneumonia that went septic. That makes six, SIX other events in my life, besides my cancer that have put my life at risk.

Since my cancer days, these six events put me in a position, that I was not prepared for, nor thought I had the ability, or the fortune, to survive. The reality, is there will be likely more of these events.

Over my years of survivorship as a peer to peer counselor (I counsel fellow cancer patients and survivors), there have been many survivors whose bodies had gone through so much trauma, their bodies could take no more. They had run out of time. As I write this post, I mourn yet another one of those survivors, a special one to me, as she was one of the first I met, way before Facebook, and on the other side of the country. I will share my tribute with her as her own post, as she deserves. She, like so many others, were also younger than me. Time. I wish she, they, could have had more. There was so much more for them to experience.

So yes, when I get asked, “what do you want for Christmas?” or “what do you want for your birthday?”, I respond, “time, more of it.” If there is one thing I have learned about cancer and its survivorship, I have no control over what happens, and I live each day with the purpose of enjoying it. But as my daughters prepare to enter the next stage of their lives, adulthood, I want to see more. And that means, that I need more time. Everything else will take care of itself.

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