Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “January, 2020”

How Road Trips Have Changed

“99 bottles of beer on the wall.  99 bottles of beer.  Take on down, pass it around.  98 bottles of beer on the wall.”  The things we did as kids to occupy our time on road trips.

Of course nothing beat harassing the driver in the car behind ours because they had to look at our stupid faces we made for however long they followed our car.

God help you if you got stuck riding on one of these things for any duration.

Ah… good times.

As a grown up, all I was worried about was having some good tunes to listen to, enough to last the length of time it took to arrive.  Because nothing was a better gauge of how much time you had left to go, than, how many CD’s you had gone through already, and still had to go.

Then, there are the road trips as a parent.  Along with all the necessary baby supplies, there was now the on-board entertainment.

With two children, all that was needed was for both to agree on which movie would be watched first.

And then they become teenagers.  I was expecting to recall the old days of stupid and nonsensical songs.

I want to be clear.  I was blessed with two great travelers.  They started at a very young age with a 16 hour non-stop flight from China, each, and endured several trips, many longer than a six hour drive.  So, my daughters keeping themselves amused is not really a concern.

As I drive with them now, they keep themselves entertained.

And so began the escalation of the level of entertainment.  As my daughters peruse social media, one stumbles upon a particular crude meme, which by itself, stands alone as a conversation starter.  But as my older shows it to me, the gears between my ears go into reverse, and recalling the road trips of my childhood, I take what my daughters have given me…

Upon realizing what I am looking at, the challenge is issued.  How many words can we come up with that will rhyme with the sound “a-shun” to make a catchy slogan to go with the meme.

That killed about a good half an hour of time on that long drive, and provided a lot of words, and a lot laughs.  Then it was back to their phones while I continued the drive.

Out of the blue, I hear from the back seat where my older daughter is sitting, “so Dad.  Who do you think is the better whistler?”

By now I had been driving  four and a half hours straight, listening to “Roxanne” by Arizona Zervas for seemingly the dozenth time, not an exaggeration either and the song is ten times worse than the “Roxanne” by The Police.  Before I answered my daughter, I realized that I actually did hear both of my daughters whistling along to the song, that evidently my efforts to drown out the music, drowned out the whistling as well.

Regardless, I normally do not tune my daughters out for any reason, and having done so in this instance, I was still able to give an answer to my older daughter’s question.

Me:  You know I am not going to answer that question.  There is no “better than” ever, when it comes to you and your sister.

Sibling rivalry goes back centuries.  But over the last several years, I had been noticing a ramping up of “competition”, mainly stirred up in a one sided fashion, always the same daughter looking for the verification of a notch over the other sister.

Besides the fact that my daughters are both adopted, they are legally sisters, but come from different provinces.  They have different skin complexions, different shapes.  Even their hair is different in texture.  The bottom line, I love them both the same.

Decades ago, my mother had been a newspaper reporter for a local paper.  One of her fellow reporters had gone to report on a car accident involving a young driver.  My mother told me the story, how the while the reporter was interviewing the mother of the teenager, who sadly had been killed in the accident, the reporter had discovered that the mother had another child.  To witness my mother tell me what happened next, was pure horror.  The reporter asked, “so which child was your favorite?”  I was not even a teenager myself when I heard this story, but it has always stuck with me.  I could not believe someone could be so mean and insensitive to ask a question like that, EVER!  But before my first daughter was ever placed in my arms, regardless how many children I would have, I would never allow a question like that to be asked of me.

Over the years, I have been asked repeatedly about the “so who is better” by my daughters, more often by my older.  The comparison could have been about karate, eating habits, and of course school.  School comparisons are the hardest to be neutral about, because unlike comparing habits and activities, grades are black and white.  And at least once a year, maybe even twice, I am challenged about the difficulty or ease of school grades.  Both are good students, that is for sure.  But that is definitely where the similarity ends.  They have different study habits.  Both have different interests in school, and therefore have different academic plans.  And yes, grade results are different.  For the most part, they have not had the same teachers for their courses which also plays a role.  It is wrong for either to feel that one just has an easier time, or “comes natural”, and I remind them both of that.  But we are entering an even more difficult time next year.  One daughter has begun the SAT process, and my younger daughter will begin her testing next year.  So I will not only have grades to disprove in importance for comparison sake, but now will be results of the same test, taken by both, for the sake of their continuing education, which of course I am hoping for both.

This issue has its moment where it is a concern to me.  Self esteem development during teen years is tough enough without feeling good enough cognitively.  And if you are an older sibling, there is definitely that feeling that there should be an edge when it comes to grades and scores.

Or could it be more than just sibling rivalry.  What if, as parents, their mother and I actually created the situation that has at least one daughter striving to be different, or better?

I swore I would never do this to my kids, and it happened.  Sure, they looked cute dressed alike, something that was once specific to identical twins, and hilarious unable to tell who was who.  But except for Hallmark Cards or Normal Rockwell paintings, I personally do not care for dressing children identical.  But they were cute.  As time went on, my older daughter would hear the question, “are they twins?” when clearly they are not, but it actually became an irritating question to her.  She loved her sister.  But it bothered her to be considered a twin.

Complicating the matter, was when the decision was made, and I need to state, not by me, and quite possibly not originally agreed upon by both of my daughters, that they would share a bedroom.  They each had their own rooms for the first three years, and then they ended up in the same room, “because that is what sisters do.”

Combining these two factors, I cannot help but wonder, dressing alike, sharing the room with each other, did we as their parents create, or at the least enable the competition levels of the sibling rivalry to escalate.  Admittedly, dressing alike did not allow them to stand out from each other, and having them share a room, when they did not need to, prevented them from developing their independence.  And now, there seems to be a struggle to stand apart, and the only way to accomplish that, is to have higher marks, or to be “better than.”

It seems like a monthly conversation that I have with both daughters.  I emphasize how much I love them both the same.  There should be no competition between them.  The things that they cannot control that one would have an advantage over the other, is their age, and the time that they were adopted.  Everything else is being determined by nature and nurture.  As they get older, their own individual interests have either developed, or are beginning to develop, and maybe those will change.

And besides loving both daughters the same, they will both get the same encouragement and support in their goals.  That should be important to any parent.

A Question I Already Knew The Answer To

Reality is beginning to set in.  In just over a month, I am going to officially recognize 30 years as a cancer survivor of Hodgkin’s Lymphoma.  I will save that hype for a very inspirational post around that time.

This will be the last of my “30th Anniversary” posts, filling in the story line, as best as I can remember it.  After all, I did not have social media to document my every step of the way (we did not even have the internet at that point) and in all fairness, with the uncertainty of my future, dealing with cancer, documenting anything was the last thing on my mind.  I wish I had thought differently.

The truth is, I could have, and should have been celebrating this anniversary in just over a week from now.

I was warned at the beginning, to be careful about marking the final date of my treatment on the calendar.  Pyschologically, sure, it can give you that positive image of the end goal.  But the body is put through an enormous strain, physically and emotionally, that anything can happen during the next six to eight months.  All of a sudden, a date you had been counting on, gets pushed back for any number of reasons, such as getting sick, or blood levels not being high enough for the dosages necessary.  The only thing worse than the cancer itself at that point, is to be told your treatment is going to be delayed to allow your body to have more time to recover.  If that were not bad enough, then you have to see it on the calendar, and you must make that change to the calendar as well.  And that reminder will always be there.  It is unbelievably devastating when that happens.

With the diagnosis of any cancer, not just Hodgkin’s, the life is interrupted.  We have lost all control to roll through life as we had been, day by day.  We have a new schedule of events to follow, and there is often very little wiggle room to enjoy anything we once did prior to our diagnosis.  To the person not dealing with a cancer diagnosis, the answer to the simplest of questions is always obvious, you do what you have to do, to get through your treatments, and if that means giving up “stuff,” so be it.

It is not always that easy.  Like I said, with a cancer diagnosis, we give up control of our lives for however long the path takes.  It is easy for me to look back now, at some of my questions about “can I do this” or “should I do that”, because with a clearer head now, and a longevity to match, I can say that I definitely feel my decisions and answers were and still are the right ones.  But even my own experiences were not enough that one respondent to a reply I sent to a reader about a decision she wanted to make, blasted me as being judgemental, insulting, and dropping several F-bombs on me, finishing with their suggestion of me going on a final destination.  The question that prompted that response?

“I have heard that drinking alcohol during treatments may cause pains and headaches.  Is it really that bad if I have one here or there?”

Again, I have been at this a long time, dealing with survivors of all longevities, and current patients.  So along with the many other replies, I added my two cents.

Me:  I have heard this concern many times about alcohol causing pain, in fact, having the pain associated with the Hodgkin’s itself.  To my experience, it has not hit everyone, but a good majority.  Though I was of legal drinking age, alcohol was not as important a beverage for me to have while I was going through my treatments.  But Coke was.  And every time, and I did it, a total of twice, that I drank Coke during my treatments, I had extreme discomfort which I was warned to avoid caffeinated beverages, and decided to test that theory, and lost.  I did this with other things too that I decided to try in spite of being warned against, processed food such as cheese.  I finally decided it was not worth it.  So my suggestion to you, as someone having been there, done that, clearly you have been given the warnings, and you have been given responses both for and against.  Ultimately the decision is yours, but please do not take the answers to be a “permission granted” to go ahead and imbibe based on the informal survey.  You could be the lucky one who does not get the discomfort, you might not.  The question is, is it really worth the risk for just the months that you are going through treatment?

And then I got the beratement.

This situation comes up regularly though, and not just about alcohol.

With the growth of new hair, some survivors cannot wait to get back to hair coloring and other processes which carry their own cancer risks, and of course the questions seeking “permission” from others that it is okay to proceed.  Again, it is a personal decision that has to be made by the individual, and the fact that a person asks it, that person knows there is a risk.  Then the next question that has to be asked, “is it really worth it, or that important?”

Another question that I deal with regularly, is about whether to work or not.  I have written about it in the past in great detail, but briefly, again, an individual decision.  And though the only work I missed for the entire 8 months of chemotherapy, was two hours every other Friday for my injection, I thought this would be a positive thing for me.  It was a much needed distraction from the day to day dealing with my cancer.  I proved my determination every day.  I showed everyone, I was not going to be defeated.

But I paid a price.  It was a huge risk  for me to make that choice, and were I faced having to do it again, I would not work.  The reasons are simple.  The body is beaten up terribly from the chemo, physically already stressed, it does not need the added fatigue from a daily work grind.  Emotionally, I dealt with so many co-workers who believed that I was being given preferential treatment over them, although to this day, I do not know what it would have been.  I was never given any special favors from my employer.  But the stress from my co-workers added to my day to day struggles with the chemo, often were so difficult to get through my work days.  And then, there was also the risk of my health put in jeopardy.  Working with a large number of co-workers, most would not stay at home if they were sick with a cold, flu, or anything else.  Going through chemo, my immune system was already suppressed, exposed to all kinds of germs in our office and surrounding areas.  If I were to catch anything from them, it could lead to a delay or interruption in my treatments.

I was treated in a time before there were workplace protections in place, courtesy of the Americans With Disabilities Act (ADA).  While yes, the distraction of a daily activity from your treatment schedule can be a good thing, if you are able to exercise your ADA rights, then do it.  And yes, the ADA is about to turn 30 years old as well.

So I talked about making choices during treatments.  My treatment schedule would go through the entire winter season.  I was an avid skier for many years.  And it was during my January treatment that I asked my oncologist about the possibility of me being able to ski.  I asked the doctor before doing so, because I had heard of increased risks of injury during treatments, especially broken bones.

I was a good skier, but more of a recreational and a slower procession down the hill kind of guy.  I was not really at too great a risk for any fall or injury.  But the doctor took it from a different approach.

Doctor:  Well, I don’t see a problem with you skiing if you have to.   But you have to ask yourself this.  You are obviously going to have to be dressed warm right?  Which means you will undoubtedly end up sweating a lot, and being Winter, you might catch a draft, sweated, and well, you know, end up developing a cold or something.  Is it really worth it, if when your next treatment comes around, and your blood levels are too low to give you treatment, because you wanted to go skiing?  I mean, it would probably only delay it a month, but will that month make a difference to you, just so you can ski?

Just like all of the other situations that I discussed above, we know the answers.  We just want someone to give us the guarantee that we will be fine, the schedule will proceed as planned.  Of course, we would be able to pin the blame on someone else, because “they said so.”

I would go skiing, just it would be the next year.  It was more important for me to complete my schedule as planned, the beginning of February.

Remember the other decision that I made earlier, that did come back to bite me in the ass, and in a hard way.  I came down with the flu, going around in our company because people came into work sick.  I was on the tail end of the illness when my final treatment, scheduled in February was to take place.  But my blood levels were too low to be given my treatment, and therefore, my final treatment would not take place in February, but hopefully March.

I was devastated.  It was supposed to be the end.  Instead, it would be another month.

See you then.

What Drives Me

I was asked, if I could in just one word, describe what drives me.  I am going one better… no words.

As the saying goes, “a picture is worth a thousand words.”

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