Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

Coulda, Woulda, Shoulda


When I became a father, I wanted to make sure that I spent every possible moment with my daughters. We took every opportunity for any adventure that came our way. Of course, it also helped having daughters that had no problem asking, “can we Daddy?”

No regrets. Nothing left on the table. Nothing left unresolved. This was an attitude that I developed not after reaching remission for Hodgkin’s Lymphoma thirty-three years ago, though I wish I had. Instead, it was a tragic evening, just before Christmas, now decades ago, my stepmother had been hit by a car as she was crossing the street. Just prior, she and my father were having an argument. He, in a huff and aggravated, instead of walking out together with her, walked out of the house first, to wait for her in the car. He witnessed the entire accident.

My father tortured himself for decades, until he passed, now almost ten years ago. My stepmother is still alive. She has no memory of the accident, never has, yet my father continued to carry the guilt, feeling it was his fault for having the argument in the first place, that they did not stay and work it out. Or that had he walked out with her, he would have seen the car that she did not, and prevented the accident from happening.

Common sense tells us, we cannot change the past, what has happened. There for, we need to prevent regret and the need for remorse. Have you ever heard the expression, “don’t go to bed angry?” Do you know why that is? In case either you, or the person who was mad, does not wake up, permanently, never having had the chance to resolve that issue, like my father. Even though my stepmother had no memory of the accident, he could never resolve what happened.

My first experience with this situation personally came with the passing of my grandmother who was terminally ill from ovarian cancer. The last day that I saw her, just two days before she was to start chemo, we parted very akwardly, as my grandmother had been distracted clearly by the upcoming treatments. There was no hug or kiss goodbye. There was no “I love you Grandma.” She died the next day. I missed that last chance the day before. That has haunted me forever.

Several years later, when my survivorship world would get turned on its head, emergency heart surgery, I found myself helpless to resolve the one thing I needed most, a last hug from my young daughters, age 3 and 5 at the time. When I left them the prior morning, I was just going in for a simple procedure, one that would keep me overnight. But I told them that I would see them when they got home from school and daycare the next day, not to worry. That never happened.

The procedure that I had done was called a catheterization. It was supposed to be a simple, go up through the leg, through an artery, and place a couple of stents at my heart. When they got to the location, they realized my situation was much worse, near fatal, and I was scheduled for open heart surgery the next morning. I would not be allowed to go home, I would be admitted into the hospital. I could not see my daughters.

This devastated me. I was going to be undergoing a surgery there was a fairly decent chance I would not survive. I wanted just one chance to hold and hug them one more time, forever, in the event it would be my last time. With the hospital more than an hour away, my (then)wife was not willing to go pick them up to bring them to see me. At best, when my wife arrived home, she would call me and put the girls on the phone to talk to me. Spoiler alert, I did survive the surgery, and eventually got to see me daughters in person four days later.

Later on, this situation would happen again, three more times, where I would be unable to see my daughters prior to major surgeries I needed to have, related to my cancer treatment late side effects, because of Covid-19 risks. All three needed to be done as the risks of doing nothing were higher than the risks of the corrective surgeries. A Covid-19 exposure, would delay those surgeries, something time was not on my side. But different from my bypass surgery, I was at least able to see my daughters via video. Not the same as a hug, but at least I could see their eyes and expressions. More importantly, they could see that I was okay.

I am at one of those moments again. Though not for my health this time. My older daughter is travelling abroad for her next semester and will leave in less than a week. The plan was for her to visit me just before Christmas, for me to spend some time with her, as I will not see her again, likely until Father’s Day. But as I said, there is/was that need, I wanted to give her the biggest hug, tell her in person how proud I am of her, and to not only do well, but to have a great time, a great experience, perhaps a once in a lifetime experience. But two days before she was set to fly to visit with me, someone in her house tested positive for Covid, resulting in my daughters both having enough concern for me, to cancel this trip.

This time is much different for me. There is a very dark reality in the corner of my mind. It is an issue that most “healthy” people cannot understand, but it is a reality that I have accepted long ago. I have great doctors that handle all the issues I face in my survivorship, so it is not a concern, should something happen in that regard before my daughter returns. Currently I am not aware of anything imminent.

But… and this is a big BUT… as I am long into my survivorship, decades, a shortened lifespan really is anticipated because of the damages done through the years. So, if it is not one of the health issues that ends our story, it is likely going to be an unpredicted event, and/or complications from that event. For the next four months, I have to hope that this is not my fate until she returns.

I want to be clear, I do not spend my days thinking or worrying about dying. Not at all. I go to bed each night, with my plans actually written down on paper for the next day. I plan to wake up and get things done. But what does not help, is the common comment, “aw, come on man, you could get hit by a bus crossing the street tomorrow.” And while that may be correct, there is one difference. The average “healthy” person, does not have someone pushing them into the path of the bus. And that is what it is like for a cancer survivor with this late side effect issues. Yes, I could get hit by a bus, but there is a crowd of “people” waiting for the moment to give me that push.

I am doing all I can during this time, with our distance, to make sure she knows how proud I am of her, how excited I am for her with this opportunity, and how well I want her to do. I am hoping for tons of photos of her journey that she is sharing with several of her close friends travelling with her. I will be talking to her multiple times over the next few days before she gets on that airplane, and I will tell her I love her each time.

I just wish I could have one more hug before she goes.

Don’t Just Take My Word For It


I am starting off the new year with some big plans for my book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor.” Of course I would like everyone to buy it and read it. But I had always hoped to make my effort more expansive. My plans are to return to the public speaking circuit again to events such as the Relay For Life and other cancer symposiums. I also want to add social media video, such as YouTube, so that viewers can actually see the proof right before their very eyes. No matter which direction I go, my goal remains the same, to reach as many people as I can with my story, in hopes that it will inspire all who read it. 

You don’t need to be a cancer patient or survivor either to follow it or understand it. While I do go into some details of my cancer journey with Hodgkin’s Lymphoma, the book does not bog the reader down with all kinds of “sciency” terms. ”Paul’s Heart” helps the reader, no matter which demographic they belong to (patient, survivor, caregiver, family member, etc.), understand the needs, emotionally as well as physically, that a patient goes through. ”Paul’s Heart” is about hope, a lifetime of hope.

You don’t have to take my word for it. Here are some of the things being said about my book:

“honest about survivorship…a must read for people in the medical community…” – Trish, long term cancer survivor

“Uplifting…his positivity is inspirational” – Michele

“It felt like Paul was in the room speaking directly to me…” – Sophia, long term cancer survivor

“full of heart… so relatable” – Heidi, long term cancer survivor

“Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor” is available now in both paperback and E-book on Amazon at the link above. Please, buy the book, recommend the book, and know that there is hope and life after cancer.

To Port Or Not To Port


When I think of the word “port,” my mind naturally goes to a place where a cruise ship pulls in for passengers to get off the boat, or perhaps where our country receives imports from other countries. But for today’s cancer patients, a “port” is a device that makes administering chemotherapy so much easier, and comfortable.

For survivors like me, we did not have the option of a port to administer chemo. But as you read my book “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor” (available on Amazon), the port is another great progress made in treating cancer.

The question came from one of my feeds for current Hodgkin’s Lymphoma patients. ”Are you able to opt out of having a port for treatment?” This seems like a perfect question to ask by someone with no experience in cancer, and also likely to not have had any kind of surgery previously. The port is placed under the skin, which requires surgery. So, that of course is scary. And because diagnosis and staging is done with less surgeries than when I was treated, unlike just being another surgery for me, this can be overwhelming.

Typically, once placed, the only ones who will be aware that you have a port, is you, your oncologist, and your oncology nurse administering the chemo. Except for a bump or some raised skin, underneath your clothing, it is not visible to anyone else. So cosmetically it does not harm.

Here is the true benefit. Chemotherapy wreaks havoc on the veins, irreparable damage. I am not going to get all nerdy and scientific, as my experience and history explain it pretty well enough. I simply have no surface veins left for even a simple blood draw for a normal non-cancer blood test. As I went through each treatment, more and more veins became less usable. This also meant more “needle sticks” to find other veins.

Of course, I did get through my treatments, without ports being available yet. But now, here is how a simple blood draw goes for me. I walk into a lab. I sit in the chair. And the phlebotomist or tech asks me my name. I say, “Paul Edelman. I am a 33 year survivor of Hodgkin’s Lymphoma with chemo-ravaged veins. I am a hard stick. So I am going to ask you to use a “butterfly gauge” needle, and if you are able to find a vein, only if you are confident that you can hit it, then go for it. Otherwise don’t. I develop major anxiety with multiple sticks. If you don’t think you can do it, ask someone who might have more experience, or if you can use doplar to locate a deeper vein. I don’t mind. I actually prefer that.”

Even if you were not the one drawing blood from me, would you want that kind of pressure put on you? Would you be irritated with the whininess? Would you do all you can to prevent a panic attack that will begin with draw attempt number three? This has been my life for thirty-five years now. My daughters have always been better with blood tests than me. I do not bother with being embarrassed. I combine all my blood tests to be done at the same time. And there is only one place that I have confidence in the staff to listen to me. I have actually been in the ER with nurses who refused to even try because they knew what I was talking about.

I would not be in this situation today, if I had the option to have a port, and have my chemotherapy administered that way. There would be no seek-and-destroy veins, just the constant dose into the same location. No stress, no anxiety.

I really cannot on the port itself since I did not have one. My father had one placed when he was treated for his lung cancer. But the overwhelming response to the writer was in support of getting a port. You could see an understand the writer was apprehensive, possibly scared. We do not come into cancer with experience, normally unless a patient has relapsed or developed another cancer. And “back in the day,” there was no social media to seek peer advice on what to do.

While there were a minority of patients who toughed it out without a port, the majority of patients expressed relief with having had the port placed. One response actually mentioned one of the only times a port might not be considered, and that is if the surgery and recovery were to delay treatment beyond any reasonable timing.

The important thing to keep in mind, just as the situation with cancer itself, the port is not permanent. The port will eventually be removed after a certain amount of time that chemotherapy is completed. The difference between those with ports and me? Those with ports will still have working veins for routine bloodwork. 

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