Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Animals”

Making, Saving, Remembering Christmas Memories

As I wrote previously, I am not a big fan of this time of year. That is not to say that I do not have good memories. In fact, I have plenty, really the only reason I do not give up on the holidays completely, the hopes that someday, I can find a way to embrace them as I did long ago.

Many years ago, I recall making a comment, that my maternal grandmother, was the “glue” that kept us all gathering together on the holidays. That when she was gone, so too would be the traditions of Christmas Eve service, presents the next morning, and the best Pennsylvania Dutch Christmas feast featuring homemade stuffing (we did not call it dressing). My grandmother’s final Christmas with us, we had two tables completely filled. At the time, we were unware that would be her final Christmas.

1997 was her last Christmas, and as anticipated, the last time all of us had gathered together completely. There would be miniature gatherings throughout the two days of Christmas in the years that followed, but none as we had done in the past. Today, those Christmas’s are just a memory.

Any hopes I may have had of turning my attitude around about the season, came with the arrivals of my daughters. There had been both renewed traditions and new ones created, all to the glee of my daughters. As in my past, health issues and at least one tragedy would once again have a permanent impact on my anticipation of future holiday seasons. But of the years that were free of the difficulties, there are so many memories.

Unfortunately, divorce would have a major impact on the Christmas holidays between my daughters and I. I would not necessarily call it a bad impact, just different. With sharing time between their mother and I, I volunteered to let them spend the actual holiday with their mother, while I would see them the day after. This arrangement allowed me to separate the negative that I carry with me about the holidays, by not actually celebrating on the actual date, while recognizing the special time that I get to spend with my daughters each holiday. Over the last nine years, we have all of those memories.

So there is a new chapter of holiday seasons coming next year. With both daughters attending college, one has a unique schedule, which means that the Christmas holiday may just be the only time I get to see them both at the same time while they are in college. But we will continue to make memories.

I do not necessarily believe in horoscopes, but the one pictured above was sent to me. I read it in amusement, I cannot say that I anticipate anything new to happen with me or my friends, but January will begin a year of change. One that will finally bring me relief of stress, struggle, and conflict. I will hope, it is a lot to ask, to have a second consecutive year without a health challenge. This past year was wonderful not to be under a knife or poked. I cannot remember the last time that consecutive years of decent health happened.

Finally, as we enter this season, my heart is with all my friends and family, who are celebrating Christmas, some their first, without a particular loved one, whether it be a spouse, sibling, or tragically, a child. No matter who is missing from the celebration, the pains may be different, but they are still real for the person impacted. I know that I still grieve for both my grandmother and my father, which I guess is a way of still keeping them in my heart this time of year.

I am not sure if I will get another post off before the end of the year. As I mentioned, I have some fun planned for my daughters when they come to visit after the holiday. So, in case I do not get to write anymore this year, I wish you all a happy holiday (there are too many for me to list each one, the only reason I don’t – don’t read into it with political correctness), and I hope your New Year is healthy and prosperous.

A “Paul’s Heart” Christmas Carol

Every December, I am faced with the same situation as my birthday falls this month, renewing any or all of my driving information. My license is good for a number of years, as is my handicap placard, but my registration gets renewed every year, even though I have the option of multiple years. I choose not to do multiple years, because if something were to happen to my car, and I would need another, that would be a second registration I would have to pay. This scenario played out a few years ago, when my car was T-boned. The DMV, Department of Motor Vehicles does not give you a pro-rated refund for the time you no longer have the car, nor do they give you credit for the time left towards a replacement car.

There are very few places that you will wait longer in a line for service than the DMV; lines for rides at Disney, the post office in Naples during Christmas season, and a customer service line for any airline following the cancellation of a flight. But with a fully charged cell phone, I felt I could keep myself entertained for a potentially long afternoon, waiting to renew all three of my driving needs. Before I dove into my phone, I just looked at all of my paperwork to make sure everything was in order. For some reason, I immediately honed in on the “expiration dates”, or how long each would stay valid. This is when my mind started to take me down a path I try not to think about. Will I still be around when these things need to be renewed again?

As a long term survivor of Hodgkin’s Lymphoma, dealing with a plethora or multitude of late developing side effects, I live my life holding a “Pandora’s Box” underneath a “Sword Of Damocles.” I know most if not all of the health issues my body deals with in regard to the late side effects from my treatments. The only thing I do not know, is when each will become a problem to be dealt with immediately. One problem gets dealt with, another problem needs attention. And really, as bad as all this is, as long as I have skilled doctors who listen to their patient, me, and the knowledge I have about what I have gone through, I have managed to get through everything.

But there is a darker side to my survivorship, and shared by many other survivors, a stronger recognition of our mortality. Because long term survivorship is still a relatively unknown field in medicine, though medicine is beginning to catch up, unfortunately, not fast enough for us. With the internet and social media, fellow long term survivors can share their experiences with others, allowing us, in a way, to teach or train doctors how to handle patients with our needs by learning from survivors. In the circles I associate with, there are well over a thousand members on one of our social media groups alone, located all over the world.

Many of us survivors develop close bonds to others, even meeting other survivors in person. I can tell you there is no other feeling, that seeing someone in person, who is experiencing similar to what you are going through and the understanding that is shared and felt.

I mentioned mortality earlier. Most of the other survivors I know, we all know, that regardless how long we have survived our Hodgkin’s Lymphoma, while a great number of survivors may be fortunate to never have to deal with any late developing side effects from their treatments like I have, there are many who have. And then there are those who are completely unaware as to the mysterious things that are happening, unable to put two and two together, to connect the dots between declining health and late side effects. Because they just do not know, and were never told it could happen.

In any case, if we are lucky, we have a doctor that has knowledge and understanding of our unusual health history. We are even luckier if the health issue de jour that we are dealing with, can be dealt with and healed. And then there are times, that our luck turns south, and the prognosis is not good for a recovery. And then, there is the everyday dangers that even healthy people face if we overcome our health issues, crossing the street, driving a car, slipping in the bathtub, also known as a sudden accident. The dangers for us long term survivors is that our bodies have been through so much trauma, we are already at a disadvantage for a doctor trying to save our lives, with our deteriorated body conditions. The most glaring of the facts of our mortality, while the survival number of years is in the decades, that does not mean well into our years of life. In fact, as one fellow survivor once wrote, many do not reach past the age of 60. Combine that with the longevity of my paternal side of the family with an average age of 55 years old, and I am more than aware of the odds against me.

I have laid the groundwork. I am at the DMV. I am aware of my unique mortality. I am approaching another year older, another year older as a cancer survivor. While I wait for my number to be called, for the DMV that is, not the mortality, my mind begins to wander. I can visualize someone, looks like my late father. Acknowledging a conversation that we had with each other when he was alive, he reminded me in this thought, that I was a survivor, there is no such thing as giving up.

My father was absent most of my childhood, yet he was able to remind me just how “good” my life turned out to be. No, it was not a “Norman Rockwell painting,” but I did okay with what I had and who was not in my life.

And then we began talking about my early adult years, in particular, the years that I fought Hodgkin’s Lymphoma. We talked about my later years, with all the health struggles I had faced, but he would remind me, all the lives I had touched, including his as he faced his own battle with lung cancer. The fact was he reminded me, I had done so much in my life, not just for me, but for so many others.

And then the image faded away. In fact, not just my dad, but all the things we had talked about, were all gone. While I did not have a “grim reaper” in this moment of wandering, it was clear where my mind was. I am between two age medians, my paternal average of 55 years of age, and the seeming equivalent to climbing K2, reaching age 60 as a cancer survivor of over thirty years.

Tomorrow is my birthday, turning 57 years old. The awareness of my mortality is both a blessing and a course. So far, having the doctors that know how to deal with the issues from my late side effects, has kept me alive. Constant surveillance keeps my health from getting to the life and death moment as happened in 2008. As they say, what is happening to me cannot be reversed, but it can be slowed down, and managed (to a degree).

But I have a knowledge of so many other survivors who have passed, and while many have passed as a direct link to their late effects, there are also others who passed away due to an otherwise common event.

Finally, there will come a time, that all the things that doctors have done to save my life over the decades, will need to be done again. My history and treatment of Hodgkin’s Lymphoma, made every one of these original surgeries high risk for complications and death. Having to do any of them again, the risk is even greater of a complication.

No, I do not need that ghost of future standing in front of me. And if I had the chance, I would give him the push into the grave, because in my heart, I am far from ready to have this thing called life, end. One time unthinkable when this all began, getting to watch my daughters grow, I have seen them come to the end of high school, and begin college. And there are more milestones that I want to see that involve them. And at this point, the way I feel physically, I believe I will get to see those days.

But then there is a point when I say, no more birthdays, the I will not get older. No more new years so that I will not pass another year of survivorship. Just let me ride this thing out to watch my daughters do what I have dreamt their whole lives to do.

It is important that anyone reading this understands, I do not go through my life, worried or thinking I am going to die every day. Far from it. Each morning, I wake with the intention of seeing another day. I have so much I want to do. It is the reality of the knowledge I have, that just reminds me, I am not the one in control. To quote the lyrics from the Bon Jovi song “Live Before You Die,”

“I made mistakes I caught some breaks. But I got not regrets. There’s some things I don’t remember, but one thing I don’t forget. When you’re young you always think the sun is going to shine. One day you’re going to have to say hello to goodbye.
Shout it out let someone somewhere know that you’re alive.
Take these words wear them well, live before you die.
You learn to love to live. You fight and you forgive. You face the darkest night. Just live before you die.”

The Days After

The first few days following a major hurricane can be described in any number of ways, likely depending on how much the devastation has affected a person individually. Shock and sadness are a given as the loss sets in that our once daily lives in paradise are changed forever, perhaps, irreparably. It is easy to feel overwhelmed at the amount of clean up and repair in the days ahead, not even knowing where to start. And when our mind stops whirling like a cyclone from all that must be done, either common sense or survivalist tendencies kick in. It is this behavior that can either help, or make things worse.

There are two main things that those in the path of a hurricane, or the devastation of a hurricane, will need, gasoline and bottled water. The demand for both is an immediate switch that gets flipped, with the first words uttered by a weather forecaster, before suppliers have a chance to prepare. Artificial shortages are created, leading to panic of the possibility of not having what is needed. Someone with a calm demeanor can rationalize, that if we just purchase our goods at our normal rate, we should be able to get by until increased supplies arrive. Instead, supplies are empty of both within hours, and from there, supplies of both are not able to be kept up with. As the storm passes, all anyone knows is that there is no gas and no water. Lines form for hours at any gas station able to operate, and grocery stores, ration out water supplies as they become available. Then come the days after.

There are several behaviors that come forward in a time like this. First and most obvious, the curiosity of the devastation. As soon as you step outside of where you rode the storm out, you can see the immediate impact. But without power, cable, and wifi, we want to know just how bad it really got. This actually ends up being a bad decision for several reasons. One, with downed lines and trees, these dangers, especially if submerged in water, can be deadly. Second, “looky-loos” as they are called, often get in the way of rescue efforts, in worst cases, needing being rescued themselves. And of course, there is the unnecessary waste of gas just “riding around.”

Which of course, leads to the next issue, finding gas, or even an operating gas station. Relying on the “gas buddy” app could be misleading with people putting in false information. But the first thing you had to do was to find if a station was working, which if you saw a nearby traffic signal working, was an encouraging sign. Likewise, there would be a lengthy line of cars, many there for seven to ten hours, having hopes of being lucky to buy gas. It is inevitable that throughout this process, there would be at least one jackass somewhere, cutting into the line, causing authorities to respond as tempers flare.

Grocery stores, would open as soon as they could, if able to, usually with the help of a generator. But as good as sign as this was, anything in the store that was refrigerated would be tossed and unsellable. You would be able to buy bottled water as long as supplies lasted. I can tell you that as of today, four days after Ian, all shelves locally are still completely empty of fruit, vegetable, and dairy products. But as supplies come in, they will be gobbled up and hoarded by those afraid it may be too long before they get a chance to buy more. So this supply will remain near zero.

Traffic is a major safety concern, as many intersections no longer having operating traffic signals, with a six lane road intersection. It is a “courtesy” situation, everyone is expected to stop at each light that is not working. Six lanes of north and south traffic intersecting with six lanes of east and west traffic, all trusting each other to be courteous and take turns, until someone just says “fuck it” and ignores the unwritten respect. Then it becomes a free-for-all and then humans are placed in the intersection to direct traffic. This is another reason authorities do not want unnecessary vehicles on the road. But you know society, “I have a right to be on the road.”

There are several local businesses who may have been able to survive with little damage, enough to still be able to be open. Many will work to serve food to first responders and emergency workers. Others will try to prepare foods for locals, unable to cook or even have a place to stay. Unfortunately, there will be those who look at the open sanctuaries as an opportunity for “life as usual – ‘I’m out for a nice dinner” and end up being demeaning and disrespectful because the restaurant may not be able to offer a full meal, service may be slow, because workers still have their own mess to deal with damage wise back at home.

Finally, this is a heavy tourist area. And once the fall rolls around, along with hurricanes, so come all the vacationers, snowbirds, and seasonal homeowners. Things are bad enough for us as locals with the devastation and shortages, but curious or entitled travelers will soon arrive, compounding our problem. On social media pages, you can already see locals emploring everyone to stay away, at least for the the time being. If you need to come down, to check out property, and it must be done personally, fine. Plus, with groceries already at a minimum, gas in short supply, we do not need the thousands and thousands of visitors right at this moment compounding our needs. But the reality is most will come down to pick up their seasonal traditions of eating at coastline restaurants, boating excursions, and many more activities that make this such a great place to live.

But as I experienced with Irma five years ago, and the great everglade brush fire two years later, those here for recreation are not shy expressing their displeasure with having their fun times interrupted by inconvenience, expecting everything to be normal before they arrive. But the truth is, it will be a long time before anything is considered normal. And if that is how they want to spend this season, and they know this upfront, then fine. They have no right to complain how slow recovery is going, or how short supply things are, especially if they are adding to the problem.

Like I said, you can either stay out of the way, help, or add to the dilemma. It does not take long to see who is who.

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