Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

One Of A Million Little Things


I hate getting attached to a television series. I always want them to go on and on. Only the Simpsons seem to have gone on forever. A Million Little Things was one of the rare series that I could actually relate to with many of the story lines. But as I binged the final season recently, the show connected to me a lot closer, a lot more personal than I had expected. It brought up feelings that I had not dealt with in over nine years.

The story line will do nothing for those around me as far as offering any insights. For me, it allowed me to see that what happened was the right thing, exactly what was wished.

The character, Gary, was dying of cancer. Treatments were no longer working. All around him, including his wife, were pushing for unproven alternatives, available only out of the country. Gary’s wife had talked him into travelling for that treatment, insisting that he not give up, just as he pushed her not to give up as she faced her own battle with cancer earlier in the series. There was one difference in Gary’s case. His cancer was so far advanced, the likelihood of this alternative treatment working was slim at best, if at all. And if it did not work, then the last moments that Gary would have, with his wife, and his friends, would never take place.

Gary and his wife, were at the airport with the whole crew of friends there to see them off. Dramatic pause, Gary and his wife change their minds, and decide to take Gary back home, where he will spend his final days, surrounded by those he loved and loved him.

I know this feeling all too well. I was in that similar situation, although not on television.

As my late Father’s lung cancer progressed, rapidly, my position as medical proxy soon came into play. Along with my step-brother, who was handling my Father’s legal affairs, decisions needed to be made, as it was discovered that my Father’s cancer had turned terminal, and was progressing rapidly. There was much to prepare for, most importantly to my Dad, was care of my step-mother. He was her caregiver (as a result of an accident decades earlier), and now, both were going to need round the clock care, at different levels. They had never been separate from each other in their forty plus years. And we were determined not to allow that to happen. Again, difficult decisions needed to be made, based on what my Dad wanted.

Long story short, we were able to arrange for my parents to be together, for the end. Decisions were made to put them in the same health care facility. And being in hospice, meant there would be changes with my Father’s preventative care, maintenance medicines for things like cholesterol would be discontinued. Also, in the event of illnesses, curative care would not be given, which was difficult for many family members to understand. But it was simple, my Father was going to die. Why would you want his suffering elongated? These were policy and procedure issues, beyond my control, but I accepted them. I was willing to take the heat and frustrations from anyone who did not understand. I was honoring my Dad’s wishes in his final care.

It was a last ditch effort that I was approached with, that rang similar to the final episode of A Million Little Things. There were family members behind my back, pursuing other possible treatments. One had found a clinical trial, for a drug to treat the most dire of lung cancers. Ironically, I was familiar with this trial, as I worked for the pharmaceutical company that was researching it. And I was familiar with the requirements, which my father had no chance of qualifying for. Forget the fact he had only limited time to live, his body had gone through so much trauma with a lobectomy for the lung cancer, but prior had a major heart attack. But once conversations started carrying, all efforts were directed at me to “fight” for my Dad. Again, I knew this issue was all procedural and was not worthy of wasting my time, but I let anyone and everyone say what they wanted, even if to my detriment.

At this point, just as in the TV episode, all anyone was doing at this point, was losing precious final moments with my Father, including me. Frustrations rose so high between me and other family members who felt I gave up on my Father, rather than accepting his fate, and honoring his wishes. Things have been said that cannot be taken back. And final moments were forever lost, scratch that, taken from me by not allowing my Father to have the peace that he wanted.

In the end, I did for my Father as he wished, as painful as it was for me. I no longer care what anyone else thought at the time.

This Cannot Be Stressed Enough


A tragic story came across my news feed this morning. A young man passed away from just two weeks into his treatments for Hodgkin’s Lymphoma. Now I need to be clear, the post appears to have come from a friend, not a relative so the details are coming third hand.

It needs to be stressed, his passing is quite complicated, or rather, from complications. He did not pass from Hodgkin’s itself, and not likely, possible, but not likely from his treatment itself. There are a lot of unknowns with this post not being from a direct family member, so I want to be careful not to speculate. The person posting the article said that he evidently had an infection, but had confused it with possibly being side effects from the chemo. By the time he sought help, he was full blown septic, and passed away. His profile picture shows a young man, probably not even thirty years old, and likely quite healthy otherwise.

Again, I want to be careful with what is known and not make any determining conclusion as to what happened. Because I do not know, and neither did the person writing the post. And though I am not a doctor, I am only fairly certain, neither is the writer. But here is what I do know from personal experience, and my involvement with the cancer community.

Our bodies do let us know when something is wrong. But it is more than just noticing, action needs to be taken. The writer mentioned that her friend was not feeling well for quite some time. I will admit that I am someone who “ignores” or does not recognize when something does not feel right. I have had numerous lectures from medical personnel, that I should have gotten medical attention much sooner, as I look at them like a deer caught in headlights.

I am not sure when this young man developed his infection, and I would only be assuming that it had to be after his treatment, since bloodwork is done prior to the administering of the treatment, and an infection likely would have shown in the bloodwork, and his treatment would have been halted until the issue had been determined and treated. And of course, once treatment is administered, any number of side effects can occur with any level of discomfort. Here is where it gets difficult. And here comes my warning to you, whether in treatment or a everyday healthy human being.

If you truly do not feel well, especially after treatment, as I often tell cancer patients, “if you eye lashes hurt, call your doctor. Let them decide if it is something that requires attention or if it is nothing. They are the ones with the education and training.” All to often, we simply do not want to bother our care staff, because we “know this stuff was supposed to happen,” or “it’s not that bad,” or, “they have more important and sick patients to worry about.” NO! NO! And NO! If you are feeling something unusual, you are the most important person to your doctor and they are the only ones who can determine whether or not you need additional attention.

Again, I do not know the chemo regimen the young man was getting. But if it was the standard, which has been used over four decades now, there are drugs used that can cause issues immediately, but when they do, there is usually time to catch them before any true damage is done. This man’s situation does not seem like that is what happened, but rather, having an infection, receiving a treatment, which of course, will drive down the body’s immune system (its ability to fight infection), and send the situation to a point where little if anything can be done. And that is what appears to have happened.

Admittedly, I can relate to this young man. Just as an example, one of many actually, when I refer to the time I had my emergency bypass, I had symptoms for over four months, and did nothing because I did not think of it as a big deal. I had gotten to the point where my cardiologist had told me after the surgery, “it was not a question of ‘if’ you were going to do, but ‘when'”. I would love to be able to write that I learned my lesson after that, but I did not. And it is not something I do on purpose. I honestly do not recognize when I have symptoms. Yes, I have had other situations since, some, just as dire. And if it were not for someone around me, actually noticing my facial expression changing or some other sign, this story could easily be about me.

Listen to your body. It lets you know when something is not right. Your life matters. Let those trained in medicine tell you, if it is something that requires attention or not. And this does not matter if you are dealing with cancer, surviving cancer, or never had cancer.

It’s Quiet Here. Too Quiet.


It happens at the end of every visit from my daughters, the silence. I go from daily wake-ups, making breakfasts, preparing lunches, driving one to work and back, and doing “Dad” stuff, either teaching life lessons or sharing memories, to silence. Full stop. Nothing to do. There is stuff I can and need to do, but it is still so quiet.

The first half of their lives, all living under the same roof, a beat was never skipped with bed and bath time, meals, homework, and play. And honestly, though my heart ached being separate from them following the divorce, I never really had any opportunity to “not realize” the silence. I was either immediately immersed into my custody case, or facing an imminent health issue related to my cancer survivorship, simply put, either too busy or distracted to realize the silence around me.

But following their visits to me, it was a different story. Living alone, I never realized the quiet. Maybe that is because I always had some sort of noise playing, usually music. When they arrived, I had things to do. It was just like the days when we lived with each other. Breakfast, lunch, dinner, playtime, bedtime. And then they would go back home, and I would forget to turn anything on, whether it was the radio or television. I had nothing to do. It was quiet.

This last Summer visit was their last “custodial” visit with me. With both in college, adults, they have their own lives to live. In a way, the geographical strain combined with the custody process, might actually have helped me to prepare for this day, the official “empty nest.

“Empty Nest Syndrome” is an actual situation recognized by the NIH as “a psychological condition that affects parents, caused to experience feelings of grief, loss, fear, inability, difficulty in adjusting to the new roles, and the change of a parental relationship, when the children leave the home.” Wow. When you put it that way, it makes it feel like a super heavy time to experience.

But I am not having any of those feelings. I am actually feeling joy, happiness, hope, recognizing that my daughters are now on their way to become who they were meant to be. My hope is that I have given them the tools to make the right decisions, the encouragement to dream big, recognize that sometimes things do not work out, all in the plan to celebrate a dream recognized.

I have given them the best examples that I can to make the right decisions in two of the main issues in relationships, a role model for how to be treated and how to treat their significant other, and money. But from here on, it is all on them. Yes, the parental relationship has changed. I have gone from teacher to advisor. But to them, I am still the same man they have always known. I am their Dad. Always have been. Always will be.

This meme came across my feed the other day, and could not be any more accurate. Along with the memories I have made with my daughters, I literally have thousands of photos to actually relive those memories any time that I want, or need to. Like now, with it being so quiet, still.

Post Navigation