Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Adoption”

A Lot To Catch Up On


I have “several irons in the fire” as they say, a reference to many things happening all at once.

First, still navigating my latest late side effect diagnosis, radiation fibrosis induced lymphedema, classified at Stage 2, meaning moderate to irreversible. I need to get some forward progress going, or I am going to end up in trouble. The healthcare system has not been my friend with this process for sure, taking days just going back in forth for simple communications and relays, wasting huge amounts of time.

As I am now frustrated enough, I have reached out in a new direction, and yet another health network, I am hoping will help me with this issue. I have surprisingly gotten in as a new patient, next week. Though I have to chuckle, the note says “1/2 hour visit”. Good luck with that, as it is going to take a half hour just to go through my history, another half hour to go through all the radiology studies that have been done, and then there is the exam, and then the plan. Surely this will take even more than an hour.

Unlike lymphedema caused by lymph node removal as performed with breast cancer, radiation fibrosis induced lymphedema is actually a scarring, fibrous tissue that compresses and damages lymph vessels. The cause in my case still has not been identified yet (as to where the blockage or restriction is), and I have been dealing with this since July. I am down to about 10% use of my arm and hand, and if this is allowed to progress to Stage 3, it will be much worse for me, if the skin begins to rupture and I develope any kind of infections.

To say I am frustrated is an understatement. At least I am not dealing with my heart and these delays.

Speaking of my heart, with everything going on, I blew right past the 5th anniversary of my TAVR, my aortic valve replacement. Amazing the additional time that I have been given by a procedure I was not going to be qualified for just ten years earlier. Today, the valve is doing just fine while my congestive heart failure continues to hold steady.

In a follow up to my last post, I know that my daughters occasionally read my blog, especially when I want themt to see what I had written about them. When it comes to my survivorship, my daughters have distinctively different approaches with my health, though both expect the same. All they have ever known is “Dad gets through it,” every time. So one daughter will just absorb the information and move on, letting me know “you got this Dad.” Whereas my other daughter is like McCauley Caulken in thhe movie “Uncle Buck,” lots of questions.

So I am not going to rehash the last post, but my daughter had one question, “was there anything ever that you were not going to tell us?” I was trying to figure out what she was looking for. I was hoping she was not referring to the ultimate end.

During my divorce, before my daughters turned 18, I always told them, I will answer everything they ask me honestly. But if there was a question that I did not feel comfortable with, I would let them know, “this is one of those questions I cannot answer right now.”

But now, with both adult age, I had a different answer, as both are told in real time what happens with my health. I explained that back when they were both under 18, still under the orders of a custody order, I needed to be careful what was discussed about my health.

Nothing to do with the divorce, their mother was not very empathetic when it came to my late effects. Many spouses and family members are like this because they do not understand the complexities of long term cancer survivorship. On more than one occasion, I heard her tell my daughters “your Daddy’s fine, there is nothing wrong with him,” which of course was not true. I had a reason for what my daughters were told or not told, but lying to them was not what I wanted. I have several examples of children being lied to in that way, things ending badly, and that trauma lasting a lifetime.

But all of a sudden, through the divorce, denial became a weapon with custody. Their mother saw an opportunity to assist her with custody arguments. Though I doubt she changed her mind in belief of the seriousness of the issues, she did realize that she might be able to use the information in her favor.

With one of my late side effects being my conditions with my heart, and having made five trips to the ER between 2012-2013, their mother would argue that it was unsafe for my daughters to be alone with me, should something go wrong. What may seem like a legit concern, actually more of a convenient argument, fortunately, legally it has not standing to discriminate against a parent over health concerns. Not to mention the fact that no one was more aware of my fragility than I was. Which meant that I had a “in case of emergency break glass” plan. I knew of other fellow survivors who were also in this similar situation. Because we know things can change all of a sudden, we have to have things prepared, and an emergency plan should I have any health issue was always in place before my daughters came to me.

So my answer to my daughter was, the only time I did not tell them anything about my health, was when I was concerned about it being used against me. Now in their 20’s, they understand that. But today, they are told before things happen, to be included in my treatment plan, to be aware, and hopefully, to not be afraid. Because after all, “Dad gets through every time. He just does it.”

Music And My Survivorship


I am driving to the grocery store with my then two year old, and as always, I am listening to my CD player in the car. ACDC’s “Back In Black” comes on. I just happen to look into my review mirror just to check on my daughter as I frequently did, and I notice her rocking her head forward, back and forth, and coincidentally, to the beat of the song. Holy crap! My daughter is “head banging”, a term for bouncing the head to the beat of a head throbbing song. A lover of music, this was a proud moment for me, because I truly believe in the importance of the arts and the development of childrens’ minds.

As time went on, my daughter would move on to a new artist and song, Kelly Clarkson and “Since You Been Gone.” Now of course, barely speaking any words, she gave it her all when it came to the chorus, screaming something, on beat and on note. And then there was this classic about a year later. I got a phone call from daycare. “Mr. Edelman, we have a problem. Do you know what your daughter is singing?” Of course I had no idea what was happening prior to the phone call, but my daughter had already learned so many different songs, and to be clear, childrens songs as well. I replied, “um, not really. Why?” Wait for it, “she was singing ‘Girlfriend’ by Avril Lavigne.” Hmmm… okay, this could be problematic, but I was a quick thinker.

“Was she singing the edited or unedited version,” making reference to Lavigne dropping a “mother f-er” bomb in the song, which got edited out on the radio. They asked, “what difference does that make? It’s Avril Lavigne and it’s inappropriate!” I told her, “it matters because she knows not to sing the naughty words that are in there. And if she isn’t singing them, this call can end now.”

I was just over a year old when my grandfather passed away. Back in 1967, there were no cell phones, so not a lot of photos were taken then, including at least one of a memory that I cannot look back on, the love for my grandfather. I heard countless stories on how I was so excited everytime I was taken to see him. Even as an infant, he meant the world to me.

As I got older, just before the age of starting school, I learned something special about my grandfather, he could sing. He had what is called a “baritone” voice. And even though he had passed, I was able to hear his voice, as he had made a recording. He had recorded “Battle Hymn Of The Republic.” I remember two things, he had a powerful voice, and I wanted to sing just like him.

My grandmother gave me my beginning, by taking me to church, and having me sing on the children’s choir. This would open the door to other organizations that I would join for the opportunity to sing and perform.

(image courtesy of Times News)

I was five years old when I would experience something that I had never felt before, a roller coaster, this roller coaster, currently called the Thunderhawk. It is world reknowned as one of the top ten wooden roller coasters. I remember that ride very well. But that is not what stuck with me most. Over a loud speaker atop a telephone pole, music was playing. Chicago, “Wishing You Were Here.” That memory sticks in my head to this day. I soon learned about the car radio, and AM radio stations. And then thank goodness, FM radio came along. And something new happened, I heard people talking about the music from the radio, DJ’s. I wanted to be one. I was still singing and performing, but I wanted to expand my experiences.

Throughout Junior and Senior high school, my musical involvement continued either through choral or stage, with training and competition. After high school, I would audition and join a local symphony chorus. I would also give several attempts at joining local bands in need of a vocalist.

In 1984, my music interest and range would jettison, as I finally took my shot behind DJ tables at my college’s radio station, where I would get to play all kinds of genres of music. I would take a couple shots at commercial radio, but it would be from doing live locations, such as weddings, reunions, and other parties that I would truly find musical happiness for the next forty years.

(image courtesy of Ebay)

In 1988, music would take on a whole new role for me, and literally get me through the most difficult time of my life. It was in November of that year that I was diagnosed with Hodgkin’s Lymphoma. During diagnostic surgeries and chemotherapy treatments, my CD Walkman was filled with what I considered motivational tunes never left my side during those appointments. It seemed like every morning I drove to my radiation appointments, I would hear Madonna’s “Like A Prayer.”

After I completed my treatments, I continued with DJ-ing. And then my daughters came along, and one thing I wanted both to love and enjoy, was music. My other daugther developed her own path in music, that she still follows to this day, finding the right instrument.

It was only a week before something happened I will never forget. She was learning guitar, and learned a song that she had heard me sing, “Chasing Cars” by Snow Patrol. One night, we both sat down and recorded a video of that song, with me singing vocals. A moment I will always cherish.

As I chugged through my survivorship, I would face many health challenges, which would mean bringing new technology, my phone loaded with my entire music catalogue. During appointments of rehab and physical therapy, I would once again play motivational music for me to exercise.

Approximately five years ago, something happened. After listening to their father’s music their whole lives, it was their turn to make their musical influences on me. It is an easy task with me being open to nearly all genres.

(photo from The New York Times)

Eurovision. I had never even heard of it before, even though the international competition gave the world one of the most popular bands of all time, ABBA. My oldest daughter started showing me old video clips, and soon, we were watching each year’s competitions.

(image courtesy of Variety)

(image via IMDB)

And then two blockbuster “rockumentaries” came out, Bohemian Rhapsody about Queen, and Rocket Man about Elton John. And the connection was made about music they listened to in my car when they were younger. But now, older, once in my car, the blue tooth gets hijacked from my older daughter’s Spotify and I am introduced to new music, not mainstream, but indie music. And not just indie music, it turns out that she is often going to see them live when they are local. The full circle moment comes when some of the venues she goes to these concerts, are some of the very same venues I saw concerts at decades ago. And since punk and alternative genres are some of her favorite, some of the bands I listened to have popped up in her collection. This was cool to hear. But my musical tastes are now expanding, including the Marias, Bikini Kill, and Amyl and the Sniffers.

(image courtesy of Wikipedia)

My younger daughter, not be outdone, needs electives for her college education, and on a whim, thought a course on the Beatles would be interesting. It may have originally seemed like just an easy padding for her GPA, but she really has enjoyed the course so far, learning all of the history of the Beatles together, and having me fill her in on the post-Beatles years. We have Beatles chats at least twice a week.

But then her discussion takes an unexpected turn. She really is confused as to how the Beatles, so good, so popular, could just break up, and never take an opportunity to get back together, until it became impossible. She admits that seeing Ringo and Paul appear on the same stage in recent years show that it could have happened. And then she turns to me.

“Do you think you will ever want to perform again?” That came out of nowhere. She had heard me sing many times, and knows how important music has been to me. About the time that Covid hit, is when I stopped performing, well, because of the obvious. But over my survivorship, singing for me has not only been about the music, but therapy for my lungs and my heart, keeping both in optimum shape best I could. As long as I could expand my lungs enough, my technique and my sound was good. But without singing regularly, I stopped.

Getting back to her question, I thought about an opportunity that had come up almost a year ago. Some local musicians had gotten together, just to jam, and needed a vocalist, and asked if I wanted to sit in. It had been a while, but I really wanted to give it a go, no pressure, just to see what I could still do. Some of the players were new to me, which enabled a wider catalogue of music, songs that I had never tried before. By the end, I lost track of how many songs we had done, but they definitely enjoyed the jam session. But just as importantly, even though I was exhausted, I felt really good with how I did, my lungs supporting my voice.

And then came the idea, how about throwing a party, and we could play for everyone. To be clear, I still follow Covid precautions (for every virus now, not just Covid), but I thought I could be safe with just the spouses, and all the while, putting on a great gig. But soon I would hear that the number attending would be four times that of the band and their spouses. Initially, my thoughts were like “cool, haven’t performed in front of a large crowd like that in forever,” but then reality, and panic hit me, too many people, in too tight of an area, too much exposure. I had never felt like that before, and really felt embarassed by it, but my concerns about exposure were legit. And with this panic in my head, I bailed.

So, getting back to my daughter’s question, I can honestly say that I would love to give it one more go. I know my lung capacity has gotten worse over the past year, and my fatigue has become an issue. I would have to practice and train to build up my stamina, I honestly don’t know if I can. Would I take the opportunity if everything could be worked out? I know my daughter hopes, “yes.” She knows what music means to me. And that is purposely in present tense, it still matters to me.

Life Of A Girl Dad


I am waiting for the arrival of my two VIP’s for our annual Father’s Day weekend. So I figured I would distract myself til they land. In my head, I hear the music, “it’s the most wonderful time of the year,” which would normally refer to the winter holidays, but for me, as a long term cancer survivor, the most wonderful time of the year for me, is Father’s Day. Out of our 22 years together, we have spent 21 of them with each other, the only one missed, not my fault, as during the divorce, they were not brought to the airport, and therefore I did not get to see them that one time. But I have had 21 great weekends with them overall.

Unable to have biological children of my own due to my cancer treatments, I was not disuaded from what I always wanted, to be a Dad. And through the adoption process, I became a Dad, twice, to two of the most wonderful daughters a Dad could ever hope for, in fact, I love being referred to as a “girl Dad.”

I am extremely close to both of my daughters. I have made it a priority that they can trust me, confide in me, and come to me for support, any time of the day. The love between my daughters and I is unconditional, not transactional. There is no great feeling.

When you plant a tree or a flower, you water it every day. Some days you notice it growing more than others, and some days you barely notice, but it still grows. I have literally thousands of photos of my daughters from the days they were placed into my arms til today (and more photos will be taken). I will never forget how I had the priviledge watching them grow into their own people.

My daughters have allowed me to see the world through fresh eyes, their perspectives. They have introduced me to things before they came into my life, I would never have done. They have also taught me patience in how I react to negative impulses around me, because my response matters how they see me react.

One of the biggest impacts I want to have on my daughters at this point in their life, and I have set the example from day one, is being their example of how they should be treated, and how they should want to be treated. They will both give kindness and respect, but they also will expect it in return. They have seen me set the example for boundaries and healthy relationships.

I have grown myself as my daughters have grown. As I said, because how I react, how I process, and the decisions I have made over the years, mattered when I had extra eyes watching and learning.

From their first steps and through all of their school and extracurricular achievements and successes, I could not be more proud of who they have become. Life for them has not been easy given my health history, and I clearly would not still be here today if it were not for them. Many of our memories are not even seen in photos or big events. I remember many of our car rides and conversations, our jokes, a lot of our meals out, and so many phone calls. But the one thing that matters to me even more today, that both my daughters will still pick up the phone to call me, just to say “Hi” and “I love you Dad.”

I will definitely miss those early days of imagination and pretend. I must admit, I got lucky without having any makeovers, it full honesty I was never asked, but would have done it. Having long hair, my one daughter has been known to braid my hair out of boredome. I did my share of singing and dancing with them as they participated in their activities. As they got older, their honesty and bluntness also increased, especially when it came to Dad’s fashion limits. And then, there is the loss of “coolness” which I accepted gracefully, but found it could be restored, as their adult friends, in learning my background, had re-declared that I was cool.

I know the most pressure I put on myself, is that I am a problem-solver. I think I can fix everything. The key is to realizing that my daughters don’t always want me to give them a solution, they just need someone to listen, hear them out, to understand what they are going through, and to support them.

The hardest thing as a Dad, has been the times, watching them get hurt, whether it be a scraped knee, a broken friendship, a disappointment, a heartbreak, or even any kind of setback. The need to fix these things is real. I have done pretty good letting both my daughters go, to become independent. Bittersweet. They make their own choices, occasionally ask for my input, and will either recognize I was right, or they will take their own leap of faith. Either way, I let things up to them.

I will never hear their two-year old voice again, watch them play with their dolls. Special events in their lives are now dwindling in frequency to more of adult milestones, such as relationships and become parents themselves some day. But the one thing I have been clear of from day one, I want better for my daughters than what I had. My abilities have changed over the years with my health and divorce, but my effort and focus remains the same, I want them to have better. Every Dad should want this.

By now, most of you have seen this horrific video on social media, of a Dad, transporting his two daughters from Florida to Oklahoma for his custody period, making a stop by a convenience market. His daughters needed to use the restroom. No responsible father would take his daughters into the men’s room any more than a mother would take her sons into the men’s room. Dad’s have a difficult enough time, whether it be for the bathroom, bath time, buying hygeine products, or any other situations. I know. I have been there and done that.

This young Dad, not having the option of a family bathroom, knocks on the door of the women’s room, learning that it is empty, and proceeds inside with his daughters for them to use the bathroom. That should be the end of the story. It wasn’t.

Some stupid redneck jerk from Mississippi is also in the convenience store with his wife, apparently in a wheel chair, opens the door of the women’s restroom to help his wife inside, to discover this Dad and his daughters inside. He begins an argument in protest of a man being in the bathroom, though clearly this jerk was going to do exactly the same thing to assist his wife. Anyway, back to the events.

This jerk proceeds to call the police, saying there is a man in the women’s bathroom, and they need to come right away. To his credit, the Dad stayed cool, in spite of the fact that his one daughter was in tears from the awful things being said by the man about her father. A worker at the store, tried to console the girls, obviously distraught. As the police arrived, the situation ended, and for his trouble, the troublemaking busybody, was fined for wasting the police officer’s time, as he should have been punished.

As a girl Dad, I have seen my share of difficult situations, especially as a single Dad, always having to make sure to protect themselves against false accusations, especially when it comes to bathroom related tasks and such. Even when married, I was expected to take my daughters to the bathroom. Hell, I remember one moment during potty training, the first “poo” and the celebration that erupted after. I changed my share of diapers, gave baths until they were old enough, helped them pick out cloths, and as they got older, stood guard outside bathrooms, when they were old enough to enter by themselves.

What this jerk did was so out of line, and I hope Karma continues to reward him. To the Dad, he did an awesome job with the entire situaiton. And I truly hope he has as wonderful a visit with his daughters as I expect to very soon.

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