Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

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.

But It Can Help


If there is one thing that drives me bonkers as a health advocate who believes in universal health care for all, it is knowing the benefits of certain welfare decisions in recovery from procedures, especially when involving the heart.

Think about it, you have surgery to your heart. I purposely did not use the word major, because any surgery to the heart is major, and traumatic. Yet, when it comes to the aftercare, a patient will fall into one of two categories, and there really should be only one. Should a patient undergo cardiac rehab after a heart surgery? Does a patient really need cardiac rehab?

It really should not be that hard. The answer to both questions should be “yes.” And yet, many patients get told they do not need cardiac rehab, or will not benefit from cardiac rehab. An almost automatic pass on cardiac rehab will come based on “youthfulness.” Having gone through cardiac rehab three times (yes, I have had three heart surgeries, qualifying for cardiac rehab each time), I can confirm with 100% certainty, I did not fit in with the demographic of other participants, averaging the age of 70 to 75 years old.

I was definitely told “no” following my open heart surgery back in 2008. And it was clearly laid on my youthful age of 42. I did what I do best, and advocated for myself, and was able to participate in cardiac rehab. My other periods of rehab following my other two heart surgeries were approved easily.

Here is why cardiac rehab is so important. First, you need to understand, any procedure to your heart, whether bypass, stent, valve replacement, or even transplant, is TRAUMATIC! While the issue may have been repaired, the heart is still fragile as a patient recovers. A patient should not expect or attempt to just return to normal activities, especially when it comes to working out. But if you are young, chances are pretty good, that will be the only reason you are not referred to cardiac rehab.

In cardiac rehab, the patient is connected to a heart monitor, where a nurse follows your heart and vitals on a screen while you work out on several pieces of equipment over a time period. A trainer, supervises you and creates a beginning work out plan, and over time, and depending on the results on the monitor, increases your efforts to help you restore physical fitness. And a nurse also walks around, at least once during the session, taking your blood pressure to relay back to the nurse behind the monitor screen. At least my last two rounds of cardiac rehab, I have had three people not only making sure that I recovered at a safe and healthy pace, but that my body was accepting the efforts as well. I have personally witnessed a patient being told to stop, because something on the monitor indicated something was wrong with him. And he was taken to the hospital. You do not get this kind of care, if you are left to your own efforts. And if you push too hard too fast, the end result could be tragic.

As far as I am concerned, there is only one reason not to do cardiac rehab. As it is expensive, of course, insurance is definitely helpful to be able to afford it. But then, this is where I believe in universal medical care for all. Everyone should have this critical recovery option available.

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