Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Adoption”

There Is Life After Hodgkin’s Lymphoma

As Lymphoma Awareness month rolls on, I want to write a lighter piece about Lymphoma, about life after Lymphoma. While I wrote last, that we are never really over “cancer” even when we hear the word “remission,” there is still a life to be lived.

One of my favorite places to visit both as a child and as an adult especially with my daughters, was a place called “Boulder Field” located in Pennsylvania. I spent hours upon hours climbing all over the rocks, never taking the same path, or hiking the same combination of boulders. Each trip was different. It is kind of symbolic for all the different things that would be ahead of me in my life after Hodgkin’s Lymphoma. The ironic thing, prior to my cancer, I do not believe that I was doing much of anything with my life worthy of fulfillment or purpose. I had been content with living a “party” lifestyle that my first wife and I were enjoying. No commitment. No plan. Just show up. That was our “normal.”

But there is a phenomenon known as a “new normal” that cancer survivors experience. Resistance is futile, because it is just something that happens. It would have been easy to pick up right where I left off before the rude interruption from cancer. But with all of the toxicity and damage I had gone through with my treatments, I had to be more careful. A new “normal.” I had follow appointments and testing to undertake as part of this new “normal.” For the first time in my life, at the age of 24, I began to think of other things I wanted to do with my life. And part of that was not to let cancer dictate my new “normal.” This new “normal” was going to be what I made it to be.

A couple of years after my treatments ended, I led our church’s youth group. Actually, this was the first of two that I had been in charge of over ten years. I had done something that other predecessors had not done, and that was open the group to all ages of children, not just the teenagers. Sure, their activities were grouped just as the different levels of school; pre-school and elementary, middle school, and high school. But at least once a year, the entire program came together on a Sunday dedicated to the youth of the church, and all participated and led that Sunday’s services, no adults. The program had all kinds of activities for outreach, and the older kids, the teenagers got to experience road trips such as ski trips and white water rafting. It was an honor to watch these kids grow. In fact, over twenty years later, I am still in contact with several of them, now parents themselves.

I would get an employment opportunity that would change my life forever, working for a major pharmaceutical company in medical research. After years of trying to improve my otherwise mediocre employment situation, and in spite of having no college degree in medical research, after just one interview, I was hired. The job not only provided a much better salary, but something up until that point, since my cancer diagnosis unobtainable, health and life insurance, without being discriminated against. I would actually handle one of the drugs used in my chemotherapy cocktail. But the biggest reward was to be a part of some very important discoveries against several major diseases.

I began to travel. One wish I had was to see my favorite football team, the Seattle Seahawks, play their arch rivals, the Raiders. That trip out west, would change the way I travel forever. For me, the trip became about opportunities. On this trip, I would actually get to meet two fellow Hodgkin’s survivors in person who up until that point, I had only known through emails. Both were a bit younger than me, and diagnosed a few years after my treatments had ended. But I got to see several places I had never seen before, Seattle, Anaheim, Bakersfield, and Lake Tahoe before returning home. From that point on, nearly any trip I made after that, would almost always involve an opportunity to meet other survivors.

But one of the biggest events, which actually happened twice, happened because of the one long term and permanent effect from my treatments, the inability to have biological children. On two separate trips across the world to China, twice I became a Dad. Every day with my daughters has been a blessing, and many times a new experience, likely an experience that never would have crossed my mind such as swimming with dolphins and stingrays, exploring caves, and so much more. Nothing could be cherished more, than being their Dad, each and every blessed day. Both now in their late teens, they are soon ready to go out into the world, and make their own memories, and for that, I am truly blessed as that spectator.

I will only mention this part briefly, well, because it speaks for itself. For over a decade, I have been writing about my experiences as a cancer survivor, whether it be on “Paul’s Heart,” published in various medical newsletters, anthologies, and am currently working on four books of my own. This has led to opportunities to speak in public at various functions as a living, breathing long time survivor of cancer. A frustrating thing for me really, that more of a big deal is not made about us. But perhaps the coolest experience of my writing career, was to have something I wrote performed live:

An unexpected direction in my life occurred back in 2009, when I decided to enter politics, at our local school board level. I was unhappy with the way the current school board had been behaving and many of their decisions, which I felt would have an impact on my daughters educations. And so, I enjoyed the experience of two campaign runs. It was a wonderful and exhausting experience, there were so many memories made. Several long term friendships came from my running for school board, friendships from running mates. I wanted to, and felt that it happened, to make a difference for my daughters educations, which of course would benefit other’s children as well.

The Covid19 pandemic gave me an opportunity to return to something I enjoyed doing, playing guitar and piano again. I won’t ever do it publicly, but I am having a lot of fun again, expanding my musical horizons. Combined with my singing, I even wrote my first song and recorded it, a very cool experience.

No, my life did not turn out at all the way that I thought it would. But then again, I never thought I would get cancer either. But as many put it, “I won’t let cancer define who I am.” I am far from finished writing my story. And to do that, I have to keep living my life after Hodgkin’s Lymphoma and in spite of what it has left for me, just as my fellow long term survivors.

Twas The Day Before Classes

Twas the day before classes, and all through the dorm, excited and exhausted, this was the norm. Tomorrow begins their path to tomorrow. The things they will learn, will help them to grow.

There is a reason that I stay away from poetry. But I wanted to give it another shot, at least for this story. End result, tacky and sappy as usual.

Thy dynamics of being a non-custodial parent, I have been preparing for the day, my daughter, and next year my younger daughter, would go off to college. This is the path they have chosen, and of course with my blessing. Part of that path however, is the realization, that they are no longer “under your roof”, out of your eyesight, whatever parenting phrase you like.

The biggest part of this new direction, is the absence, doing without the constant presence or the ability to have uninhibited contact at any moment. Granted, technology such as cell phones and Facetime and Zoom have been a game changer to reaching out to a college student or the student to the parent. But, the lack of a physical presence at home, is definitely a struggle to deal with emotionally.

As I said, I have been my daughter’s non-custodial parent. We were separated by a decent distance, so visits were pretty much like “breaks” during college; a weekend here, a few weeks here, and then back. It is just for me, I had already been doing this through high school. And though the new level of education, and promotion to adulthood, the tradition was still the same this year; Summer visit, then back home, or now, to college.

I gave my daughter one final pep talk with no topics that would lead to guilt being added to one of the most exciting times of her life that she was about to begin. I urged caution and common sense when out and about. I told her I was excited to see the many new things and directions that she would take. Finally, I told her, among all the excitement, remember to take a breath in, and enjoy the moment to take in and save the memory of this time.

As I prepared to say goodbye, get that last pre-college hug, I told her I would cut back on the amount of time I was spending looking at old photos. I had new photos to take, albeit, will likely be much less. And the most important thing I would finally give to her as an adult, her space. My days of being able to see her grades and progress reports are gone. The days of me expecting her to be somewhere at a specific time so that I can call, are gone. I asked of her only one thing, that we at least have one phone call a week. I know her schedule may not align with mine, between her classes, and other activities on campus, so to make time, that we can catch up at least once a week. Of course, I told her she can reach out to me any time that she wants, though I think it will likely be kept to the once a week arrangement. I will likely keep sending my small daily text messages, just to say “hi” and that I am thinking of her.

And that was it. She was off.

An Unintended Benefit

I used to laugh at my Grandmother a long time ago, her resistance to change and technology. The struggle to get her to purchase a microwave, a dishwasher, and a VCR was real, actually took years of convincing. And even after she made those purchases, her reluctance to use them never ended, while the rest of us in the house took advantage of the conveniences those devices provided.

Progressive car insurance runs television commercials starring “Dr. Rick,” who helps adults to prevent becoming their parents, a knock on the jokes we used to make about our parents. One thing, as I mentioned above, that I made fun of my elders about, was “accepting change,” how rigid and firm they were, like a microwave saving time cooking, or a dishwasher allowing you to do something else while a machine washed the dishes, or not missing a favorite television show. “Change is a good thing,” we would constantly encourage them.

Well, it is my turn. I need to admit that. A current feature of newer cars, the rear view camera, is supposed to improve a facet of driving, maneuvering in reverse, giving you a view from the angle below your trunk level. In theory, this is a good thing. It allows you to see a small child or a low profile sports car that you otherwise may not see with simple head turns, or the peek in the rear view mirror.

But in my forty plus years of driving, I don’t like it. I think it actually increases the likelihood of an accident. And I don’t want to use it. Just like my grandmother had her reasons, I have mine. I have become my parents.

One of the first things we are taught as children, is crossing the street. We are taught to look left, since that would be the first car coming at us, then look right, and take a final look left again. This same less would be used in learning to drive and having to turn left in an intersection. So far, so good, an act taking less than two seconds.

In backing out of a driveway, or actually, backing out of a parking spot, before these cameras, I do not recall ever, EVER, having an issue. Again, the act of turning my torso and head, left and right, back and forth as I backed out of a parking spot, never caused any issue, nor an accident. But now, my current vehicle has a camera above the license plate, a distraction to me. So now along with my looking back and forth, in between looking left and right, my eyes must now stop and focus on this screen. And watch out if you can afford the cars that have the “lights” in your side mirrors that illuminate yellow or red because of the proximity of any cars next to you. And that is just the mechanics of your own car. What if you have pedestrians, who, in spite of seeing the “reverse” lights of your car lit, still will cross behind your car, immediately behind it, as you are backing up? Or, coming down the row of cars, is another car speeding for either a parking spot or to exit, sees your “reverse” lights, but instead of waiting, proceeds to zoom around your car, bulging from its parking space?

Seriously, what used to be a simple act of seconds, now must be performed at a snail’s pace. So, yes, with all the bells and whistles of technology, no, this has not made things easier. I do not like it. I have become my parents.

As a parent myself, there is a rite of passage, much like having to take your teen to a concert of a popular, albeit, annoying music group that could not be further from your taste in music, teenage driving. It appears that I have been spared both having never had to take either of my daughters to a Justin Bieber or One Direction concert, and neither, obtaining their driver’s license. The latter, getting the driver’s license is not something I am necessarily celebrating, but I am looking at the situation practically.

In full disclosure, I did obtain my driver’s license at age 16, like most of my friends. My birthday in the Winter months in the northeast of the United States, I learned to drive in the most treacherous conditions. And in forty years, I have never had an accident that I have been responsible for. With the exception of some traffic tickets, overall, I am a very good driver, and more than capable of teaching my daughters to drive safely.

There are two things that have been on my mind about my daughters driving, one is a matter of being practical with money, making common sense, while the other, is more of a “you gotta let ’em go and grow up” step in parenthood.

While teenagers see a “grown up” view to being able to drive and more freedom to go where ever and whenever they want, parents can see their teens as a convenience, a “gopher” to run to the store to “go for this, go for that,” or some other errand.

However, from the moment that your teen gets the permit to learn to drive, your insurance company is the first to notify you, to pay an additional premium. Okay, to be expected for sure. But what if your teen will not be driving as much as you think? As in my situation, with one in college, and another entering, does it really make sense to pay for a full year of car insurance, when they will not even be behind the wheel with the exception of school breaks? This is on top of the costs of a vehicle, gas, and maintenance. It makes sense really, to defer throwing thousands of dollars away, until the completion of college, especially if you are on a tight budget.

Of course, the other concern, and as I alluded to, pertaining to “letting them go,” is a fear that many parents have, waiting for their teenager to get home, whether it be a school dance, a movie, concert, or a trip to the ice cream shop. There is no rest until you hear that front door close, followed by your teenager’s bedroom door.

As a teenager, I know many of my friends that had car accidents early on in their experience. Some were quite serious. More than a few involved fatalities. Consumed with grief, I can only speak for myself, it did not matter what they were doing at the time of the crash. Someone was either lucky, struggling for life, or dead.

And I would like to think that both of my daughters will be good drivers, some day. I am fortunate that driving has not necessarily been a priority for them. And thanks to travel requirements of a “real ID,” state ID’s (official photo ID’s resembling a driver’s license), even as an adult, will now have an official ID without it being a driver’s license.

Which leads me back to my main argument, a fiscal decision to put off getting a driver’s license. Sure, if either of my daughters were going right into the work force after high school, that would be a different situation as transportation would become an issue. But going to college, and living on campus, there is no true need for a license. Insurance, gas, maintenance, and possibly a car payment, at a time when every penny counts towards. This “excuse” is not only convenient for me as a parent, but practical.

And that is how I look at it. I have made the adjustments necessary for my concerns. The dangers will still be there some day, as they are likely to get their licenses after college, perhaps even sooner. But it has bought more time. It is that same ability with logic, that I now “back in” to my parking spaces as opposed to pulling in, having to back out. The safest and smartest way to see things, are if they are right in front of you.

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