Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

The Disappearing Phenomenon


Illness doesn’t just reveal the strength within you – it reveals the strength, or absence of it, in the people around you. That realization can be painful, but it often leads people to build deeper, more authentic relationships with those who choose to stay.

So where does everybody go? Why do those around us, we consider our close friends and family, disappear when we face extreme health challenges such as cancer and other serious health issues?

There isn’t one universally accepted psychological term for this behavior because people leave for many different reasons. Depending on the reason, different concepts may apply. Social withdrawal because they feel uncomfortable, overwhelmed, or don’t know what to say. Avoidance coping, avoiding situations that cause them emotional distress, such as someone else’s cancer. Compassion fatigue which is common among caregivers or healthcare professionals who simply get emotionally exhausted. Emotional avoidance because being around someone seriously ill evokes fear, sadness or thoughts of mortality. Relationship attrition where the relationship just gradually fades over time, accelerated by the illness. Stigma or illness-related stigma when people distance themselves because of misconceptions (like cancer being contagious), fear or discomfort. And disenfranchised support when someone doesn’t receive the emotional support they reasonably expected.

Among cancer survivors, this experience is often described more simply as “the disappearing friends phenomenon,” or social abandonment during illness. These are not a formal diagnosis, but widely recognized experiences in survivorship communities.

Illness has a painful way of revealing who cannot walk through the storm, but it also reveals the rare souls who never let go of your hand. Hold tightly to them, for they are your true family and friends.

In most cases, it isn’t that anyone stops caring. Quite the opposite. Having to hear that someone they know or are close to is facing a life and death challenge, is something they will never forget. It is that serious illness changes relationships in ways most people are unprepared for.

When your world grows quiet and the crowd disappears, don’t mistake their absence for your worth. Some people leave because the road is hard, not because you are unworthy.

Some people disappear because they are afraid. They don’t know what to say, so they say nothing, and that is actually a good thing. They worry that they will say the wrong thing, remind you too often of your illness, or have to confront the possibility that something similar could happen to them. And then there are the thoughts and fears, that the one they care about so much, may not survive.

The people who walk away during your darkest days don’t define your value. The ones who stay remind you of it.

Others disappear because illness is inconvenient. Yes, I know, but you are the one going through it. When life becomes centered on appointments, treatments, fatigue, and uncertainty, relationships that were built around fun or convenience may not survive. Crisis reveals which relationships were deep and which were mostly circumstantial, and finding out what you thought were most dependable, and not after all, can be devastating (such as a marriage).

Cancer doesn’t just test the body, it tests relationships. Some will fade away, but those who remain will become the light that helps guide you through the darkness.

Some people are overwhelmed by their own lives. They intend to call or visit, but days become weeks, and eventually guilt keeps them away even longer.

You may lose people you thought would never leave, but you will also discover people you never knew would stay. Sometimes the greatest gift hidden inside hardship is learning who truly belongs in your life.

There are also people who simply cannot tolerate suffering. Seeing someone they care about in pain forces them to face their own fears about mortality, aging, and loss. Distancing themselves becomes a way of protecting themselves emotionally.

One of the cruelest side effects of serious illness is discovering that not everyone has the strength to stand beside you. But one of its greatest gifts is discovering those who do. Treasure them, they are the people who love you for who you are, not just when life is easy.

There are those who will surprise you. Sometimes a casual acquaintance, a coworker, a neighbor, or even a stranger becomes one of your strongest supporters. Illness has a way of revealing character more than history.

Many survivors talk about this as one of the hidden losses of cancer. They expected to fight the disease, they did not expect to grieve friendships. The loneliness after the diagnosis and sometimes after treatment ends can be as difficult as the physical side effects.

Paradoxically, illness can also make your world smaller, but richer. While the number of people around you may decrease, those who remain often become more authentic. You learn who will answer the phone at 2am, who will sit beside you in silence, and who loves you without having to be healthy.

For many survivors, this realization changes them permanently. They become less interested in superficial relationships and more protective of their time and emotional energy. That is one reason people often speak about “the new normal.” The illness doesn’t just change the body, it changes your understanding of friendship, family, priorities, and what love really looks like. Serious illnesses don’t necessarily change the people around us, but they often reveal who those people already were.

And no doubt, while that revelation can be heartbreaking, it can also be freeing. It allows you to invest in the people who stay, welcome the unexpected people who step forward, and let go of relationships that existed only when life was easy.

For many of us cancer survivors, the question eventually changes from “where did everybody go” to “who walked with me when I needed them most?” Those are often the people who become family in the deepest sense of the word.

Perhaps the most important thing to remember is this, that the behavior is usually more about the other person’s ability to cope than about the worth of the person who is ill. Some people genuinely just don’t know how to face suffering, while others step forward in remarkable ways. Just as there is no training for developing a serious illness such as cancer, there is no training for being a caregiver either. We are both thrown into these rolls. The realization can be painful but it often leads people to build deeper, more authentic relationships with those who choose to stay.

Ice Cream – I’ve Always Screamed For Ice Cream!


(image created via ChatGPT)

“Ice Cream! Ice Cream! We all scream for ice cream!”, the long time favorite chant. Today, thanks to a presidential act in 1984, is recognized as National Ice Cream Day. I say it is literally okay to have ice cream for breakfast, lunch, and dinner. Okay, maybe a little bit overboard, but… back in 1988, when I was going through chemo for my Hodgkin’s Lymphoma, it was not unusual for me to eat large amounts of ice cream (and pasta). Why you may ask?

Oddly, as part of my chemotherapy cocktail of MOPP-ABV, I won’t get into the individual drug names and issues related to each, I was actually restricted from certain foods, surprisingly and not a problem for me being a picky eater, the restrictions were for “healthy” foods such as brocolli and cauliflower, but also others that I did eat, such as processed foods like cheese, carbonated beverages, and bananas. The reasons ranged from contradictions to the chemo, to issues with bloating and gas, bacteria from eating raw or not cleaned well enough vegetables, or issues with high fiber which can be problematic if experiencing bowel or mouth irritation issues.

But do you know what was not restricted? Ice cream, and of course pasta. Again, mentioning that I am a picky eater, I had no problem with either of these options. However, a warning from my oncologist, “don’t go crazy on this stuff”, making reference to a major side effect from Prednisone, one of the chemo drugs in my cocktail, weight gain.

One thing that I had not expected going through chemotherapy, especially after going through radiation therapy having lost weight, was gaining weight. Anything I knew about chemotherapy stereotypes, was that patients looked almost waif-like having lost so much weight.

Unexpectedly, I gained fifty pounds during my chemo, I believe courtesy of the Prednisone side effects; increased hunger, fluid retention, metabolism changes, and yes, muscle loss. And when I say hunger, I mean ravenous. I could eat pints of ice cream at a time (which by the way also helped with the mouth discomfort), and quart containers of meals made of pasta.

The result of this diet? Something we in the cancer world describe as “moon face.” Now I am not going to post any picture examples of this, because this is definitely one side effect, next to hair loss, that really upsets us. But, just as it describes, the moon is round, and no matter the shapes of our faces, our faces look swollen, and much more round, like the moon as a result of the high dose prednisone intake.

Multiple drugs are often used to treat cancer together, because that is what was studied and determined to have the best chance to reach remission, and more importantly, stay in remission. And in particular, Prednisone actually helps to reduce side effects of the other chemo drugs, and has its own benefits of destroying lymphoma cells, in working with the other drugs to reduce any inflammation, reduce any potential allergies, and there is even a benefit to reducing (though not eliminating) nausea, that is what other drugs are for.

But it is that one super unfortunate side effect, increased hunger, that will easily cause a potentially major weight gain. Which to be honest, gaining some weight during chemo is not a bad thing. I do understand that the fifty pounds I gained was not good. Here is the important part.

Just like the hair loss, the weight gain is temporary. Just like the hair has already started growing back towards the end of the treatments, slowly but surely, so will the weight drop off. And if you use the hair growth by comparison, it is not going to happen overnight.

At the completion of my chemo, the date that I have marked on the calendar of this page, I gave myself a break for about two weeks just to soak in all that I had gone through, now in remission, gathered my thoughts, to produce a checklist of goals that I now wanted to achieve, and think how I could achieve them, and potentially how long they could take.

My number one issue was dropping the fifty pounds I gained. It definitely did not have me feeling well. So the easy part would be, focusing on my diet. Now off the prednisone and chemo, my diet was no longer restricted, and the amounts would be much smaller as my hunger had decreased. Exercise, even the smallest effort, such as a five-minute walk in the beginning and building up as time went on, would make a difference because for two years, I did nothing. As time went on, and I felt my body get stronger, I was able to do more. And yes, the weight did come off, all of it. It did take six months, and if you tell any of us in the beginning how long it would take, it would overwhelm us. But I am just being realistic. If you went through cancer treatments, you likely went through a year or more of some of the most difficult days. You can get through the recovery so much more easily.

The great thing is, of all the things that I “lost” my love for food-wise during my cancer days, ice cream is not one of them. Which is why I am definitely celebrating today.

(image courtesy of Simon Says Dip This)

(image courtesy of Istock)

And with three meals to choose from, it will help me not be limited to my choices… waffles and icream for breakfast, an ice cream sandwich with my lunch sandwich, and a nice sundae to cap off Sunday. Sounds like a plan.

Cancer – What You Want To Know


I have been feeling restrospective a lot lately. And because it has been so long since I was diagnosed with cancer, Hodgkin’s Lymphoma, back in 1988, while I have seen progress in better diagnostics, progress in better and safer treatments, there is still something that has not made much if any progress, and that is, talk about survivorship or life after cancer.

There are three questions that pop into mind once you hear the words, “you have cancer.” The first, “Am I going to die?” And the second, “What am I going to have to go through for treatments?” A compassionate oncologist is going to answer the first question with as much positivity, and with very good reason because of all the progress made in cancer research, many cancers are highly successful with treatment. There are so many treatment options available and thanks to all the cancer survivors who came before them, science has learned what worked, and what needed to be worked on further to increase safety and success. But there is one question that I know I asked my oncologist back in 1988, and I still do not see any kind of answer to that question today. “If I get to remission, how much longer of a life will I have?”, and of course with hindsight over the last two decades, “what price will my body pay for everything that I was exposed to?”

Normally, most of us survivors only hear of the magic “five year” mark. And until we hit that five-year mark, we struggle with powerful paranoia and fear of relapsing or recurrence. Those first five years after treatment ends are the most challenging physically and emotionally. The fear of recurrence or relapse is very real, as every ache, pain, cough, or swollen lymph node immediately triggers the thought, “it’s back.” Follow up appointments which are meant to confirm all is good, can still bring intense anxiety while we wait for the words from the oncologist, “still all good.” And if there are any scans involved, we experience what is called “scanxiety,” a real and separate post.

During those first five years, we are learning to trust our bodies again. No one understands the unpredictability of their body more than a cancer survivor. There is living with the uncertainty, “will it come back?” or “How many years do I have after cancer?”

On top of that, there is the physical recovery, dealing with fatigue, which honestly never goes away fully, stamina, memory or concentration challenges (sometimes referred to as “chemo brain”), nerve problems which can persist long after treatment ends.

And then there is the adjustment emotionally. While everyone else around us celebrates that everything is over “for them” and life can get back to normal “for them,” we survivors often still process what happened for a long time and suffer from anxiety, depression, grief (yes, grief, we have experienced “loss” of what we once knew was our life before cancer), and PTSD, post traumatic stress disorder.

As we return to life, we have to find a new “normal,” as we discover so much has changed about us from how we once were. Our priorities (especially sweating the small stuff), relationships, work, and future plans are all handled differently. We do get back to managing our finances, rebuilding routines, and importantly reconnecting socially. It can be difficult at time as we have to figure out who is able to handle when we still need to talk about our experiences, not everyone is able or willing.

As much as I tried to be an inspiration for being able to get through treatments for cancer early on, after that five years had passed, I became focused on showing newer patients something to look forward to, life after cancer. I got married (twice actually), bought a house, had a nice career, and had two beautiful daughters, and a golden retriever. No, this was not the life I was heading toward in 1988, but it was what I was given after cancer.

But there was one discussion that had been left out, especially after that five years had passed. I was “dismissed” by my oncologist that it was unlikely that my cancer would return after that five years. Great! That’s all we cancer survivors want to hear. This was our gold ticket to move on with our lives. There was one problem, some of us would end up going a separate path from the straight path of life after cancer. It would take decades to get discovered and discussed, and even now does not get the attention that it should. And I am not going to make that part of this post as I talk about it in great detail on this page already, the developing of late side effects from our treatments. There is no rhyme or reason why or who develops them. Those of us who do get diagnosed with these issues are contributing to current information in regard to survivorship. But there still remains one question.

Can you live life after cancer, without having to deal with the memories, or the late side effects? Of course you can. But the question should be, “should you?” Like I said, there are no statistics stating who has gotten to live and how long without ever dealing with their cancer history again. Likewise, your oncologist should be referring you to see your primary care doctor for regular annual follow ups, not for the return of the cancer, but for the potential, not guaranteed, but potential for the development of any late side effects. Again, I have documented often how close I came, because no one was looking.

Of course, if you are like me, having these late side effects, we are documented, now. Because of those like me, and the thousands who came before me, doctors are aware of the issues that plague many survivors. It is just the surveillence and advocacy is not there, until it is too late.

So I did some research as I love to do. Now keep in mind, social media support pages can be overwhelming no matter what they health issue. Why? Because literally, everyone on those pages has an issue. Those who have nothing wrong, don’t need to be on a page like that. And those would be the numbers you are looking for, living after cancer, without the thoughts of cancer anymore. But here is what I discovered.

The fact is, we have no idea how many cancer survivors there are in the world, 30, 40, or 50 years after diagnosis. There are no worldwide or US registry that tracks survivors in that way. But one large long term study found that 52% of Hodgkin’s survivors were still alive after 30 years (it does not specify if with or without late side effects). At 40 years, the number drops down to 42%, but the study hints at issues from late side effects playing a role in the lower number. And well, 50 years, there is nothing to refer to. But I can tell you, I know plenty of 40 and 50 year survivors, and have even seen some 60 year survivors.

It’s frutstrating. Why don’t we talk about survivorship longevity, probably the most important issue once treatment ends? Or rather, why don’t we want to talk about it?

We keep all kinds of statistice on diagnosis and deaths, but never how many survivors there are or the milestones they reach. There is no excuse for losing track of patients today with technology and AI for when patients move or change health care providers. And then there is the biggest reason for wanting to know this statistic, the development of newer, better, and safer treatments.

And then there is this, funding. Survivors are not a priority for research funding. Research continues its focus on curing, not surviving and studying people alive decades after.

Look, you can live a long life after cancer, and also be unfortunate enough to deal with late side effects from the treatments. I know, I am now 37 years from my diagnosis. But because you do not know if you are going to be the lucky one who gets away actully 100% done with the topic of cancer, or someone who will face heart disease, secondary cancers, or endocrine, lung or vascular complications. And only awareness and prevention will give you those extra years. It is not an understatment, I never expected to be here to witness this milestone in my life.

But I did. I have lived long past the period that most cancer statistics discuss. And researchers are increasingly realizing that survivors like me need LIFELONG follow up care. In fact, while the medical community catches up, it is my “older” fellow long term survivors I actually owe my life to, being the ones encouraging me to be proactive, get help when needed, and most importantly, support me emotionally during the times that I struggle, and I still do.

It may have been unintentional when my doctor told me he would not use the word “cure” with me while being confident he would get me into remission. But it is hard to consider myself “cured” dealing with all the late side effects I deal with, while being in remission from the original cause. But boy, do I wish he would have told me that I would need to follow up medically for the rest of my life, that some of these issues could take decades to appear. I wish I had been warned about the emotionaly challenges. And I do wish that the majority of my friends could understand, that I cannot just “move on” or “just get over it.” Because I live with this body and all it betrays me with, every day, and often on my own so I do not burden others.

Make no mistake, cancer survivors are living a long time today. I am only one voice, so I am telling one person at a time. I have written to many networks and organization, and no one seems to want to talk about survivorship, just like science, the stories are only there for who gets diagnosed and who dies.

This is my story. I am a 37 year cancer survivor. And I feel I have a lot more years to go. Who else wants to tell their story?

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