Paul's Heart

Life As A Dad, And A Survivor

An Age Appropriate Situation


(picture courtesy of Google pics)

One of the most difficult topics that comes up amongst my fellow cancer survivors and patients is “what do I say to my kids?” Almost cliche, my response, a common one, is usually “keep it age appropriate.” But what exactly does that mean… age appropriate? A 3 year-old will not understand someone is dead? Should we over load a teenager with the facts behind the passing, just because we think they can handle it (fact – a teenager’s brain is still forming into their late teens, so, no, they may not be able to handle or process someone dying on the level needed).

As an adult, no, even since I was a child, I have experienced death in various situations. I had been the child watching grown-ups around me, bawling their eyes out at a funeral service without knowng why, even not knowing the person, having just been dragged there so as not to leave me alone in the house. As a young teenager, one year in particular, I experienced the loss of several relatives. Upon high school graduation, I had already buried two classmates, and it seemed all too often, after graduation, another classmate would die, year after year.

Then, in the working world, I would experience loss, sometimes even more difficult than the death of a family member, a co-worker or friend, someone I would actually spend more time with as an adult than my own family. I understood where the joke came from, a housewife asking her husband why he was reading the obituary, his response, “to see if I have to go into work today,” referencing his own mortality, just the happen stance of being an adult.

And of course, being a cancer advocate and friend to many survivors and patients, I have experienced death more often than I ever thought I would. As it turns out, I experienced something new a couple of days ago, watching my daughter deal with someone passing, a funeral.

My daughter works a Summer seasonal job when she comes to visit me. This year marks her fourth season. And she has worked each season with several of the same co-workers. But it was one co-worker, last year, had been battling cancer. Again, the word “cancer” not something unknown to my daughter, my daughter had a high level of empathy for her co-worker and the precautions around her co-worker, to not put her at any kind of risk that would jeopardize her health any further. After all, we were and still are, dealing with Covid which has been responsible for delaying cancer treatments for so many. So my daughter, was one of the few who voluntarily wore a mask around her co-worker. My daughter was not sick, but her wearing a mask gave her co-worker peace of mind that my daughter was going to do her part to protect her.

Well, this year, as arrangments were being made for my daughter to begin her season’s work, her boss informed me, that her co-worker had recently passed. The news had been hard on all of them, and she asked if I would tell my daughter before she began work. Of course I said I would. My daughter has been aware of others who have passed, family members, but had been too young to really remember; her uncle, her grandfather, and a great grandmother. This was someone however, that she had a relationship with, year after year when she came to visit me. And like me, her co-worker shared a common bond, cancer. My daughter, knowing my example of cancer, only knows of people surviving cancer, or at least remembering (she was eight when her grandfather died of lung cancer). Now she was going to find out, not everyone does.

I actually think it was harder on me to tell my daughter, because this news was going to cause pain for her, and no parent wants their child to experience pain. Having never met the woman, my eyes began to well up as I startedt to tell my daughter. Yes, I am impacted by news of someone dying from cancer even if I never knew them. Her boss had asked me if she would want to attend the memorial service, and other than being dragged to services as a younger child, she had no experience with this, so I needed to ask her if she wanted to attend. And she expressed that she wanted to attend.

I attended the service with my daughter (she does not drive) and while funerals are generally a sad time, as my daughter listened to the eulogy, she found it difficult to be sad, with all of the wonderful things being said about her former co-worker and the way she lived her life, and the impact she made. Of course, my daughter knew many of these things about her co-worker, as she spent the last three years working with her. I told my daughter, “she really meant a lot to so many, and did so many good things. I hope people let her hear the words we heard, while she was still alive.” My daughter agreed, and said, “that is exactly who she was.”

I remember as a child being dragged to funerals and the horrors that filled my head. I was forced to “touch the hand” of the deceased by my elders, “important” to feel death and to see what we are like without “life.” Another horrible thing I was told as a child, the deceased was “sleeping.” I can remember being petrified of never waking up again. But for my daughter, something neither of us planned to experience with each other, as it was stated by the priest, my daughter was able to “celebrate” the life of her former co-worker, clearly a life to have been happy for.

To Know You Are Not Alone


A little over two weeks ago, I got to attend an event that as a long term cancer survivor and patient/survivor advocate, only comes around every so often. By far, this was the largest endeavor for those especially with health issues similar to mine, caused by circumstances similar to mine – a diagnosis of Hodgkin’s Lymphoma and late developing side effects from the various and extreme treatments used to save our lives. One of my friends, also a fellow long term survivor whom I met many years ago previously, during the height of one medical emergency after another recently, described himself as a “unicorn,” because doctors soon learned that treating Danny, with the health crisis he was in, was like seeing a unicorn, a rare if not impossibility. Health issues like Danny has, also myself, and many in attendance at this gathering experience, literally filled the room with “unicorns.” But unlike his doctors, there were many advocates and doctors and nurses in attendance who “got it” when it came to the care of long term survivors. To them, we were not “unicorns,” but people who need help, care, and support.

I will say, that since the pandemic, except for a few rare occasions, I have avoided large indoor crowds, and when I have been inside, it was for a cause I felt worth the risks I was exposing myself to with my extra vulnerability to Covid19, such as my daughters graduations. I have functioned quite well over the last four years, continuing the precautions that have kept me from being infected, grocery shopping, picking up take-out food, going into offices, even going to see an occasional movie. But attending this event admittedly had caused me the greatest anxiety because I worried how strong I would be, to not let my guard down, and be exposed to someone unknowingly infected. This post is not about Covid19, but as soon as I felt comfortable enough, not only did the mask come off, but I did something I have not done in over four years, and that was only because the emotions of the moment were stronger than I could resist. I have been waiting to see so many of these other survivors for years, and to be reunited with others I have not seen even longer. Hugs were bound to happen, and did so in great abundance.

I think everyone would agree the weekend was too short, and not enough time to get everything done in between getting to meet everyone that up until that point, knew only through the digital world. Some arrived early, some stayed an extra day. But the main day was about the advocates who came to speak to all of us. There were personal survivor stories, lots of statistics, and doctors explaining a lot about the “why’s” that many of us long term survivors have the health issues that we do. I had a personal connection to two of the speakers, both doctors. For the first time, I got to hear how my one doctor found himself studying Hodgkin’s Lymphoma and survivorship.

I was also honored and humbled to join one of the two “survivorship” panels to answer questions alongside of my two medical heroes. I was asked to speak on advances in advocacy over the years. Many of my fellow survivors can relate to a time when we were on our own. So once the world wide web came long, and gave access to support via email, and then eventually social media among other resources, to end up in this ballroom gathered together at one great event, supporting each other, this is what advocates do, I would say the advances in advocacy have been as huge as advances in diagnostic methods and treatments for Hodgkin’s.

But I came to realize something. There is a difference between advocating on the smaller level, such as peer to peer, and the much greater scale such as the organizations that were represented and also spoke. They are the ones doing the research on our needs and speaking to our legislative branch of government for assistance financially and for other resources. And they are doing great things for us, though in the future. In the present, many need help now, and joining together with others in this hall, gave everyone a chance to share ideas, suggestions, and support. Most importantly, it is one thing to have a conversation online. It is another thing, to experience in person, that we are not alone after all.

There was a reality though, there were many who were not able to attend, some who had originally planned to attend. Long term survivorship is very uncertain. The room was filled with many of us, 30, 40, 50 years of having beaten a deadly disease, now living with the late side effects from the treatments that gave us those years. We do what we can to maintain good health, fix what can be fixed, but everyone expecting to see “tomorrow.” And unfortunately, there were so many, even recently, whose bodies could no longer handle any more trauma. This event gave many of us an opportunity to grieve with each other over the many other survivors passed over the years.

It really was a whirlwind weekend full of memories and information. Those who took part in planning and organizing it should feel proud of what they accomplished, and see the difference that it has made to those who atteneded, and the disire of those hoping for another opportunity in the future.

A Quick Follow Up


A couple of weeks ago, I shared this photo of a badly worn flag I passed on one of my walks around the time of Memorial Day, the time we memorialize our fallen military members. I have been away on a couple of trips over the last week and a half, and come back to find this…

There is a new “old Glory” now flying proudly, and now you can see the flag underneath it, representing the US Army. Look closely at the picture as you can even see the folds that remain from its packaging. But she is not being correctly and proudly shown.

Well, sort of. There is still the issue of her being flown in the dark without any lighting shining on her, or, that she is not water proof and therefore should not be hung in the rain. But hey, the main thing is, she is whole, she is neat, and flies now without being tattered.

And no, I cannot take credit for the person replacing the flag, nor do I know how the old flag was disposed of. But the situation was timed perfectly with the holidays of Memorial Day and Flag Day, to remind us just how important it is to treat the American Flag with the respect she deserves, understand her history, and know and accept what should and should not be done with her.

Post Navigation