Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

27 Jun 2023

I’m Going To Touch The Cup


There is a tradition in sports, not touching the championship trophy until the end of the championship round is complete. Many believe you jinx the team by even taking a picture of yourself (or worse one of the actual players taking a photo with the trophy), before the first game of the series has begun. Victorious players will do anything they want with the trophy from drinking champagne from it, to placing their infant child inside, to travelling the world, after they have won. But no photos before. Well, I am about to do something equivalent, but as I do, I am going to rush over to the nearest piece of wood, and give it a good ol’ knock.

I have managed to live in a world with Covid, without getting Covid. Excuse me while I quickly run to knock on wood. I am one of less than a handful of people I personally know who have still not contracted it, sadly more than three times the people I personally know who died from it, including my younger sibling.

Unlike some who actually go as far as to brag about how many times, or strains that they have been infected by, I do not consider my statement bragging at all. It made me feel very uncomfortable to hear so many exercise bravado, no fear of Covid, a disease that killed millions. I have never heard one cancer patient ever take that kind of stance.

I want to be clear. I am in no way ridiculing or mocking anyone who contracted Covid whether at the beginning of the pandemic, or even recently, whether it was not of their own doing (someone selfishly exposing them to it), or what was called “Covid fatigue,” (“I need to do this one thing.”), or first responders and medical personnel who had no choice, because of the careers they chose to get into.

But I will continue to express my frustrations with those who chose to argue conspiracy over common sense, political grievance over professional medical advice, fake patriotism over empathy, denial over acceptance and action.

Oddly enough, the group of people I personally knew, at the highest level of risk, fellow long term cancer survivors, actually fared very well, long before there were vaccines and treatments, and through supply shortages. As survivors of cancer, many of us are more in tuned with the risks we face, and react when something does not feel right. Knowing how dangerous this situation was to us, caused us to act more swiftly. As I said however, too many could not outrun Covid, either because it was brought to them, or for just one moment, a sense of false security or not, guard was let down. To be honest, I really do not believe I will be able to outrun Covid forever, anymore than I can outrun a common cold or the flu, something that I typically do not have to face, unless it is brought to me.

But as this crisis devastated the world, like spilling grape juice on a white carpet, I was not interested in “why” it happened or blame who spilled it. It just needed to be dealt with quickly, before the stain got too great. The problem was too many people were more interested in blame or accusations, instead of listening to voices of reason. And as one who has avoided Covid thus far (there I go to knock on some more wood), and to be clear, I am speaking only in my case, not for anyone else who has avoided Covid yet, or had minimal number of infections, only in my case, I am saying, the ones I relied on for the advice to protect myself, were the ones who got me to this point.

I mentioned risks. Was I in fear? Absolutely. I was a 33 year cancer survivor with a compromised immune system, and major cardiac and pulmonary issues. But did I live my life in fear these last four years? No. Did I lose anything by following the recommendations? No. With all the health issues against me, was I able to reach long term goals that I was hoping to live to see? Yes.

Did I avoid risks? No, I managed them. I weighed them. I decided which risks were worth taking, and which ones I would tempt fate. My doctors knew/know, a Covid infection would kill me (at least prior to vaccines and treatment availabilities). Yet, on three separate occasions, I underwent three major operations, two for my heart, and one for my carotid artery, in the belly of a beast (in a hospital that is), engulfed and drowning in Covid infections, along with the multiple follow up appointments. But the preventative guidelines in place, protected me, and they worked.

Some may have been cheering for me to not have visits with my daughters during Covid, whether I travelled to them, or they came to me. Believe it or not, Covid gave me opportunities to actually see them more often than I otherwise would have. And at no time, did I or my daughters contract Covid. All because we followed the recommendations.

I went to the grocery store and pharmacy. I supported local eateries, admittedly doing take out. I have to admit, I have not had interest in dining in, not because of current Covid conditions and infection rates, but rather learning how deficient many places were with cleaning (as we saw busing and table cleaning increase during the early stages of Covid, now tables and cleaning returning back to the regular unsavory conditions, under the guise of insufficient staffing… that is what really skeeves me out more than the Covid risk at this point).

I travelled with my daughters, and we did it following the recommendations. And it worked. I was more concerned with my goals that were ahead of me, than I was fighting over a president, any inefficiencies in preparations or assistance, claims of loss of freedom. I trusted my doctors and I cared about others. That was important to me. So what were my goals?

Before the pandemic, I had a list of long term goals, difficult as they were expected to reach given my health issues, that I wanted to see. The closest at the time, were seeing my daughters turn 18, and graduating high school. The last thing that I wanted was to be taken out by a disease named after a bad beer (apologies to those who actually like Corona, but I do not care for it).

There are three graduation photos. The first two were for my older daughter, because she had two different graduations, and one of those was held indoors, during a new wave of localized infections last year. The auditorium was packed with several thousand, barely anyone masked, except for me and a handful of others. Again, just like the surgeries, this was one risk I felt I needed to take. Of course Covid was still around a few weeks ago as my younger daughter graduated, but those graduations were held outdoors.

There is a huge difference between trying to prove a point, and making the decision when a risk was worth it. I have zero regrets about my decisions, and as I continue to wear a mask indoors, if that triggers anyone, tough shit. I recently witnessed a bank teller being harassed as she chose to continue to wear a mask. I do not know why she does, it is none of my business. But I respect her choice. As I wrote recently, my daughter works with a co-worker who is battling cancer, and chooses to wear a mask to protect her co-worker, as her co-worker wears a mask also.

Like everyone else, we are all tired of Covid. We had limited time and efforts to eliminate it, but too many chose to either deny it or efforts to curtail it, so now we will deal with it forever. It is now clearly about individuals choosing to do the right thing for themselves, and hope that thoughtfulness and empathy will some day prevail. Though my list of long term goals has shortened, my next milestone is three years away, a college graduation. I know what has gotten me to this point, and as they say, “if it ain’t broke, don’t fix it.” I did not think I would set foot into a movie theater again, but I had a gift certificate to use. Pretty sure my concert days are over since ticket prices are now in the range from car payments to mortgage payments. The point is, I am doing what I want and am able to do. Just to make sure, I am going to knock on wood once more. You all be safe too.

Posted in Adoption, Bullying, Cancer, Education, Family and Friends, Inspired By..., Politics, Recreation, Side Effects, The Heart | Leave a comment
24 Jun 2023

One Proud Moment Of Many


My daughter returned to her Summer job yesterday, for her third season. I am using a picture from her youth, as I try to respect her wishes as an adult and being allowed to use pictures of her older. The seasonal position has been perfect for her while she visits with me during the Summer months. And though she saw many of the same co-workers she has seen each year, there was something new she was faced with, for the first time. One of those regular co-workers she has known since she has started, was being treated for cancer. My daughter was only aware of this fact, because her co-worker felt the need to explain to my daughter, her cancer condition is why she was wearing a mask, protecting herself from any potential infection from Covid as her body being more susceptible from treatments.

She really did not need to explain anything to my daughter about why she was wearing a mask. Me being immuno-compromised, and having lost my sister to Covid, my daughter is very well aware that some of us will likely wear masks in certain situations for the rest of our lives. My daughter is not embarrassed by me wearing a mask, nor is she triggered by anyone else wearing one. But the co-worker offering a reason, cancer, brought out in my daughter, a quality that is 100%, who I raised.

My daughter was not born until sixteen years after my battle with Hodgkin’s Lymphoma. Though throughout her childhood, she is aware that I dealt with cancer. She just is not aware of how difficult it was for me, and all of the experiences that came with it. All she knew, and proclaimed whenever she had the chance, her “Dad was a cancer survivor.” It was a simple as that. But even as I dealt with all the major late side effects from my treatments, all my daughters know, and likely expect, I have gotten through every one of those events.

This was a different situation for her. To my knowledge, she has never had to deal with a classmate with cancer, maybe perhaps a parent of one of her classmates. This co-worker, an adult, is someone she has known for two seasons now. Clearly, my daughter is concerned for her, someone she knows personally, likely the first time (besides her grandfather which she does not remember him dealing with cancer), it is happening right now. Her co-worker is in the middle of treatments. For my daughter, there is an awkwardness, afraid of what to say.

I was trained as a cancer counselor decades ago. But the comfort I wanted to give to my daughter had nothing to do counseling, but rather assurance, as a former co-worker myself, and what it could mean to her co-worker, to know that my daughter cared.

I explained one of my biggest frustrations, working while I was going through my treatments, and actually many of my later health crisis, was petty and jealous behaviors exhibited by many of my co-workers. What? How could anyone be jealous of someone having cancer? No, it is not the actual disease that fellow workers are jealous of, but rather the perceived favors and privileges they assume are given to the employee, and that is simply just not fair. I recall defending myself constantly that no such favoritism was occurring, to no avail. Those co-workers just “knew” something had to be going on.

The fact was, the only work I missed, was a half hour in the morning at the beginning of the work day, to get my radiation treatment for thirty days, and the last two hours of two Fridays per month, to get my chemotherapy, and I was right into work after. I completed my work tasks without missing a beat. So, I am not sure where people thought I was getting special treatment from management. But their behavior took a toll on me, because I thought of many of these people as my friends. I thought they cared. Clearly they did not.

And that is the conversation I had with my daughter tonight, about this particular part of my cancer experience, and what it could mean to her co-worker, to be treated with respect, and more importantly, empathy and understanding. My daughter definitely knows dealing with cancer is difficult, and now she knows there may be times when her co-worker is not feeling well, or might need help with something. I have stressed to my daughter, that she does not need to have conversations with her fellow worker about the cancer, unless she is approached. However, if she sees her co-worker struggling or having a bad day, I told her at that point, she should offer assistance with the task or assignment. But never, NEVER, belittle, disrespect, or mock her co-worker and her situation. I explained to my daughter, it would likely mean the world to her co-worker, that she was working with someone who really cared.

It is the final gesture, that is not only expected of either of my daughters, but makes me proud nonetheless, because her actions are just natural to her. It is who she is, who she was raised to be. My daughter wanted me to get a mask for her to wear for herself, as she and her co-worker, work in a confined area. And though my daughter is fully boosted, as recent as last week, she understands the value and importance of protecting her co-worker from not only Covid, but any potential delay in her treatment course. Neither her co-worker or her supervisor have asked my daughter to do this. It is just something my daughter feels is the right thing to do, and ultimately, it does her no harm, and it might just help to keep her fellow employee safe.

The final comment I made to my daughter, with my older daughter sitting at the kitchen table, this, is one of those moments I have always talked about, building character and reputation. This will not only go on remembered by her co-worker, her supervisor, but will continue to fortify the heart and goodwill of someone truly special. And I am not just saying that because I am her Dad.

Posted in Adoption, Bullying, Cancer, Education, Family and Friends, Inspired By... | Leave a comment
23 Jun 2023

The “Speed Bump”


What does a speed bump do? It slows you down, if you are driving a car that is. I have referred to a couple of my former co-workers as “speed bumps” for similar reasons, because they slowed me down. But another thing that a speed bump does, if you hit it too fast, or if the hump is too steep, it gets your attention in a big way. I just flew right over a “figurative” speed bump. And just like speed bumps I see as I am driving, I knew this one was there as well. And just like other speed bumps, I often do not pay attention to them, and then wish I had done otherwise.

This was the second of two major milestones for me to have reached as a thirty three year cancer survivor of Hodgkin’s Lymphoma, my younger daughter graduating high school. But there was a speed bump approaching, and I had totally forgotten about it. Just like my car bottoming out of an actual physical speed bump, I was going to hit the “figurative” speed bump soon that I referenced earlier. And just like scraping the undercarriage of the car, this speed bump is leaving some marks.

As I did last year when my older daughter graduated, I spend Father’s Day week with my daughters. In full disclosure, this week is not just about having fun, making memories, taking pictures, we also get a lot done that needs to be taken care of until the next time that I see them both again. This year, both of my daughters will be in college, and then… well, they are off on their own lives.

If there is one thing missing from my younger life, it is pictures. I have very few photos of me as a child, and even fewer with either of my parents. Though I do have some memories of my youth, photos would definitely help to jog those memories. I know that, as my daughters often do not recall things we did together in the past. I have made sure they have photos to show them what they have done. A lot of photos.

This week has been no different, other than probably a lot less photos than ten years ago, attributed to “diva” behavior of two late teen/young adults. But I am getting my share of photos and memories. With the graduation photo pictured above, I was pumped for what I had in store for my daughters this week.

And then, an innocent photo, the type taken many times before, grabs my attention, like a speed bump, wrecking my inner core.

For the most part, most people find it hard to believe that I am a thirty year survivor of cancer, or that I have the number of major health issues that I do. I have even had one of my doctors tell me at an office visit, “you look great!”, especially when they know inside, my body is a train wreck.

But this photo shows the obvious, besides the fact, that it is obvious which shirts I must wear to hide what I have been through. This pullover shirt, exposes the major muscle loss that I have developed over the years, from my neck muscles, shoulder muscles, and chest muscles. While I currently consider myself in fairly good shape (all things considered) and my strength well enough, that same conditioning shows what I have lost.

A recent photo shows the results of damage to my neck from high dose radiation. Muscle loss from the back of the neck results in remaining muscles in the front of my neck, pulling my head forward, and eventually drooping down. Before I learned what was happening, I constantly heard co-workers accusing me of being depressed because I was always looking down at the ground when I walked. Turns out, I could not help it. Physical therapy and various neck braces can help to a certain point, but not reverse the damage that is cumulative. The degradation and muscle loss in the neck of many Hodgkin’s survivors often gets nicknamed “pencil neck.” All too often, you can pick us out just by that observation alone.

Honestly, I really don’t pay attention to it. I very rarely walk around without my shirt on, because of the horrific scars on my chest and abdomen which only took one incident to garner too much attention. I have trained myself not to really pay attention to mirrors because I know that in spite of the good shape I believe myself to be in, a side or rear view will show a “chicken wing” like appearance of my shoulders as opposed to a nice, rounded shoulder.

Normally, I do not let this appearance stuff get to me. I know that my more serious issues belong to my heart, my lungs, and many other interior issues. But as I looked at the current photo, I reminded myself, I should have paid more attention to the “speed bump.” The result, I still took a lot of photos, but now I was no longer in them, and the few that did now include me, I examined and focused on my chest and neck area to see if I hid my physical late effects well enough. Seriously, the stuff going on inside of me is supposed to be the difficult things to get through.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment

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