Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

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 Tribute I Never Thought I Would Have To Write


Her name was Lynn, but as she would write on her posts to our peer support group for Hodgkin’s Lymphoma back in the late 1990’s, she would write, “Josh’s mom.” Josh had Hodgkin’s Lymphoma approximately five years after my fight with Hodgkin’s. She and I corresponded back and forth multiple times, as she sought answers to cope with the emotional swings her son would deal with, as well as the overwhelming fears associated with getting through treatments, and of course, fears of relapse.

As a volunteer peer to peer counselor with the American Cancer Society, I had already been trained to talk with, more importantly listen to, cancer patients and survivors. But that had always been limited to “in person.” Josh and Lynn lived in California, Bakersfield to be exact.

It was late December of 2000, I had been planning a trip out west to see the Seattle Seahawks football team, play the Raiders over the period of my birthday. As I had never been passed the Mississippi River before, and unsure if and when I would ever make it that far again, I decided to increase the scope of the trip (something I still do to this day), and make multiple stops while I was out west.

I brought up the idea of dropping down from Seattle to Bakersfield to meet Josh and Lynn in person. At first Lynn said to me, “nobody visits Bakersfield.” I told her, “I’m going to.”

And so I did schedule that trip to include not only Bakersfield, but also Anaheim (to go to Disneyland), and a stop in Lake Tahoe, where I would meet up with another family I met on that email list along with Lynn, whose daughter had also recently completed chemotherapy. It was going to be a full week of fun, memories, and put my life in a direction that has been a critical part of my survivorship ever since.

And so, Lynn took me out along with her son, to show me Bakersfield, which included a stop at Buck Owns Crystal Palace which made my father, a vintage country music fan, quite envious. I would also learn about the origin of Bakersfield’s popular rock band, Korn, as they personally knew the lead singer.

That trip had been so powerful from an emotional support angle, I did make it out west again, several times. And each time, our “circle” became larger, as Lynn would get to meet two other families, all with “kids” treated soon after me. And we have all kept in touch to this day, nearly thirty years.

But tragically, our relationship went from peers with Hodgkin’s, to peers with health complications due to late side effects from our extreme treatments that were used. Of the four of us, I was the first to fall to these issues. Once again though, I would be the one they turned to, as “odd” health issues began to pop up for Josh, and then similar cardiac symptoms with the other two, that I called right from the beginning, “widow maker” level concerns with the heart, two of them facing emergency heart surgeries. Just as with my situation, more health issues developed.

Around ten years ago, Josh passed away, a grief no parent should have to face. Though nothing was pinpointed specifically, his late side effects played a role. And even years after his passing, Lynn and I kept in touch. Then a few years later, she would lose another son, undisclosed cause, but not cancer related.

Our group of four got smaller again, as Jennifer, who had survived her widow maker, developed leukemia and would eventually pass. We went from a group of four down to two. Yet still, we all kept in touch with each other. Lynn was a focal point of that effort. No matter what personal event any of us were going through, she was there as a friend with support, after all, she was “mother Lynn.”

So to discover that she had passed recently, there was not a lot of communication even among her family that it had happened, came as a shock. The reality for us long term Hodgkin’s survivors, we know that our longevity is likely cut much shorter than our healthier family and friends. But our caregivers, our personal superheroes, who give up so much of themselves for our care, are expected to live forever. They have earned it.

Sadly, along with grieving for her two sons, she had one son surviving and several grandchildren and fur family members, but she often dealt with health issues of her own, which she rarely talked about. And if she did mention anything, it was because at that moment, it had been unbearable for her. Over recent years, even more cruel than what she had gone through in her short life, she was diagnosed with Parkinson’s.

As an advocate for cancer patients and survivors, I am all too familiar with death. My own health issues related to my cancer treatments decades ago have left me with a known sense of mortality. However, the urgency and severity of several of the events have often left me with a sense of immortality which I know cannot be true. I maintain a memorial page for those who have either passed from Hodgkin’s Lymphoma or its complications. Since its inception, I have placed nearly 90 photos, 75 of whom I personally knew, on that page. Also notable, I am currently older than most of those who have passed. To be clear, I do not think about my passing. I go to bed each night, with plans for the next morning. But I do not take for granted each time my head gets to hit the pillow for the evening.

And tomorrow, I leave for a conference where over 100 other long term survivors will gather, some who I have met in person previously, others I only have known digitally. Having attended these events previously, I know the emotional burst I will feel as we all gather together. While 35 years of survivorship is pretty good, I will meet those in their 40’s and 50’s of years of survivorship for Hodgkin’s.

Lynn will be on my mind this weekend as well as so many others who have passed. She was a great friend. She was a great moral compass. She was a great caregiver. Lynn will be missed.

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