Paul's Heart

Getting Sick While Being Sick

If there is one thing that can make going through treatments for cancer or any other serious illness worse, it is coming down with something else. Contracting even the common cold is enough to delay treatments if blood cell counts get too low. And if you are like a typical cancer patient, as was I, you have a date written on the calendar, the last date of treatments. The last thing you want to have to do, is cross off that date, and write a “new” date, a later date, than what you had planned.

A post came across my media feed, “Super bummed. Found out that I have Covid so now EVERYTHING is pushed back, scans, treatments are delayed for 21 days. This sucks.”

I want to be clear, I am writing from the aspect of “been there, done that.” I was due to finish my chemo treatments in February of 1990. My first six cycles, though difficult, I managed to get through with no issues. While meeting with my oncologist, I asked him about the prospects of me being able to go skiing if I felt up to it, wanting not to get hurt or anything. I missed skiing over the previous two years, and felt good enough to try something “normal.”

While he did not disagree with me going skiing, he gave me this to think about. ”You dress in layers when you ski?” I replied yes. ”And you will probably sweat a lot, right?” Embarrassed I said, yes. ”And you are likely going to be around a lot of people in the lodge?” 

My question was simple such as asking the time of day, and instead he was telling me how to build a watch. It was a “yes” or “no” question.

“Sure you could go skiing. But look, you only have two months to go yet. Do you really want to risk getting sick, having your blood counts go low, that would delay these remaining treatments?” He was a buzzkill for sure, but he was right. I had been dealing with Hodgkin’s Lymphoma now for nearly two years, and I wanted “done.” I wanted to be getting back to my life, temporarily taken away from me by cancer.

If skiing would not get me, something else would, and did. A month later, my final month, I came down with a cold, a stupid, pain in the butt, didn’t feel that awful, cold. And of course, it impacted my bloodwork. My last treatment would have to be delayed, hence as the “countdown” shows my anniversary date of March instead of February. I worked for a small “mom and pop” type company, but large enough, and in an office environment, that made the spread of illnesses quite easy. Somehow, I had avoided anything, without even thinking about it. Until now. I was devastated. Almost as bad as the day I got my diagnosis.

For the last four years now, we have been dealing with a horrific virus, in fact lethal for those vulnerable, especially going through cancer treatments, Covid-19. The hyper awareness and precautions needed are ten-fold what I was worried about back in 1990. But cancer facilities and other hospitals all over, have done what they can to protect their patients. The rest was up to the patients themselves and those around them.

To be transparent, even though I am thirty-three years out from my cancer, the late effects that I deal with from my treatments have left me vulnerable to a Covid-19 infection should that ever happen. The warning from my cardiologist is dire, “do not get Covid-19, you might not survive it with the condition of your heart.” So, long story short, I follow his advice. Not a big deal. And I have picked up in my life, pretty much to where it was prior to the pandemic, just following common sense precautions that have worked for me all these years, masks, hand sanitizing, and limiting exposure. Even recently, anticipating a visit from my daughters from college during their Christmas break, had to be cancelled due to a Covid-19 infection in the home. My daughters had not been infected “yet,” but they had been exposed and a decision had to be made. It turned out to be the right one, to cancel their trip, as three days later (the day after she would have arrived here), one of my daughters tested positive. Had she come down, she would have spread it to those on the plane, and in my case, worse, to me. Of course, we were all disappointed, but there will be other times as opposed to what could have happened otherwise.

So I can understand the patient’s angst for her schedule of scans and treatments being delayed. I’ve been there, done that. But I also have to shake my head, and to be fair, not knowing more details as to how the exposure occurred, whether by her own false sense of concern about Covid-19 (as cases go through their annual spike again), or whether someone around her, selfishly or ignorantly spread the Covid-19 to her. The reason at this point does not change, as she put it, that it “sucks.”

I will always play the buzzkill in this case. I want patients to finish their treatments as planned, on time. I know what that is like. But especially when it comes to Covid-19, both the patient and those around them, need to take the risks of exposure seriously. Fortunately, it is just the delay of treatment if they are lucky.

Believe

If you are looking for the most positive Christmas story, miracle, or whatever you want to refer to as what is happening today, you are going to read it here…NOW!

Jessica is headed home today! That’s right, if you have been following the last several posts about her, less than two weeks since her miraculous heart transplant, resulting from a massive heart attack more than seven weeks ago, she is being released from the hospital.

The story is so unbelievable, so many things against her survival. I know, because like Jessica, I and many of my fellow long term Hodgkin’s survivors share the same complicated health histories. When we first found out that she had the heart attack, and subsequently learned that the event actually lasted over twenty-four hours before an ambulance had to be called, all we could do is see the updates about the efforts to save her life. And by save her life, that is, multiple times.

While Jessica had a lot against her, which I will go into in a moment, she had some things clearly in her favor. She is a physical fitness trainer and rehab specialist, clearly in good physical conditioning. And her age, being a gentleman, I will not say her age, just that she is younger than me, to be clear, I consider myself young.

But yes, she had a lot against her with her health. Her heart history was not as colorful as mine, but she had a prior heart surgery, along with her multiple bouts with several cancers. A common issue amongst us as Hodgkin’s Lymphoma survivors, is complications from our treatments of high dose radiation or toxic chemotherapy. Jessica was no exception. 

Once Jessica had been considered stable enough, the news came, she would need a heart transplant in order to live independently. Let me put this in perspective for you. In my thirty-three years of remission, and the hundreds of survivors that I have come across and met, I knew of no one, no one who had ever had a heart transplant, or even qualified for one. In recent years, a few survivors had come close, but passed before the opportunity became possible.

Jessica’s situation was serious, and with a transplant her only option, her fellow survivors knowing the odds of that happening, all we could do is wait. Then news came, she not only qualified, but they had found a donor.

In my years of following other survivors and their surgeries, I am all too familiar with the complications that can arise from fluid in the lungs, infections, and worse from lesser surgeries. In a good number of surgeries, this was the case. And we would expect the same for Jessica as far as concern. But guess what? Except for a few rough moments in the beginning, her recuperation went only forward in progress. I will spare the graphic details, but long story short, it brings us to today, Jessica is going home!

She no doubt has a long road ahead of her, medications, rehab, and of course emotional care. Oddly, this is one area that I have no experience in because I have never seen this moment before. But this is a moment, that I and many other survivors will build on for the future. Just like all the progress that has been made in treating Hodgkin’s Lymphoma, and dealing with our survivorship issues, we seem to now have someone, and answers of where to turn to, when and if we ever have to face the prospect of a heart transplant ourselves. Jessica is showing it can be done, and perhaps, maybe should be more seriously considered for our survivors in the future.

Honestly, this is such a great story, and Jessica is a writer herself. And from what she has told me, she has one helluva story to write.

It’s Not The Number That Bothers Me

Somehow I made it around the sun another lap, another birthday. Some will often whimper about their increasing age, all the while hailing the extension of the day of the actual event of their birth to a week long celebration, sometimes even a month. My younger daughter upon looking at a class reunion photo from this year pointed out, with all due apologies to my classmates, “everybody looks so old”. Of course, we are all the same age, but some of our physical characteristics have changed, some a lot. In all fairness, though my hair remains its natural brown color, with shades of pepper underneath the length, my beard on the chin is completely gray thanks to my father, who also carried his natural hair color his entire life. Thanks Dad.

I am glad to be the age that I currently am. I am glad for the next year that I turn older, and so on. I do not look at turning older as a curse, as that same daughter would say, it is indeed a blessing.

What I do struggle with, is the actual date. Speaking of cursed, though I share the same birthday with many I personally know, this date, and the time around it, is not a period I look forward to at all. Again, I don’t mind turning another year older. It is just for me, so many years, there has been so much darkness and crisis that have occurred the same time.

In 1974, I was not even in double digits of age, when my aunt was lighting my birthday cake on an outdoor side porch, next to a stack of newspapers she had accumulated to recycle… do I really need to explain the next part? She brought the cake, having only nine candles, not like the image on this post, into the kitchen where I and the rest of my family were sitting, and trying to sing Happy Birthday to me. My uncle just happened to be stopping by the house, when he burst into the door yelling “fire!” to which my grandmother pointed to the cake and said, “yes, right here.” Again, my uncle yelled “NO, FIRE! ON THE SIDE PORCH!”

Fortunately, the fire was contained to that porch. But the smell lingered in the house, for many days. I can actually still “smell” the burning when I think about it.

The next year, while jokes were made that perhaps we should only have ice cream for my birthday, something I would not have objected to, my birthday went without a hitch that time. But the following year, turned that time period for me on its head. Three relatives had passed away, just before Christmas Day through New Year’s Day. This darkness, or curse if you will, continued on. I have mentioned about my diagnosis with Hodgkin’s Lymphoma just before the holidays began. My stepmother was hit by a car, critically wounding her, days before Christmas. My first wife had been in a head-on car accident just after the new year began.

Only after my daughters came along, did I seem to give the holidays a break, enjoying them once again. But in filing for divorce, anticipating high conflict, I made a decision to eliminate one potential source, custody visits during the holidays. I gave their mother all of the holidays, while trying to schedule time with me on dates surround the holidays instead. My birthday, falling in December, the week before Christmas would also be sacrificed. And so, my dark attitude about my birthdays and holidays returned, they were just other days.

As if I needed any more reasons, my health jumped back into the holiday ho-hums saying “hold my beer.” Heart issues that had been on “watch” since my bypass in 2008, had begun to worsen and need attention. Sure, that was bad enough, but this was occurring in 2019, the beginning of Covid-19. Because of how quickly and deadly the spread was happening, and with the need to avoid infection of Covid-19 so I could undergo the first of three annual cardiac related surgeries (that had reached critical levels), it meant my daughters avoiding travelling to see me, so as not to bring Covid-19 to me. Both my daughters, though understanding the risks, agreed with the decisions that needed to be made. This happened twice in the last four years.

This year I was determined to give the season just one more shot. My health has been stable. With my younger daughter aging out of the custody agreement, all visitations with my daughters are now handled between the three of us. They made the decision, that they would come visit me, for my birthday, something that has not happened in ten years. Clearly this would have a profound impact on the direction of how I usually spend my holidays. I was excited. We all were excited.

Then a call came from my oldest daughter, just two days before they were set to travel to see me. Covid-19 had hit their house, not my daughters, but they were now exposed. With no time to test during the incubation exposure period, we all agreed, not this year. I could tell my daughters were upset, as was I because everything had been going right.

So, here I am, another holiday season, just looking at it as just other days, as usual. Do not mistake me though, I am very happy for everyone who can get through these days, celebrating joyfully. But there are those, I know I have friends, who are going through this holiday season for the first time, following the loss of someone close to them. And they will also do what they must to get through these days.

I am not afraid of getting older. I actually welcome it. With what I have to deal with in regard to my health, each year more that I get to call myself a long term cancer survivor, is a win in my book. The fact that I have to see so many doctors so often, is not a bad thing. It means that if something does develop, it is caught early, hopefully. This is actually an advantage over someone “healthy” who does not see a doctor regularly, until an emergency room visit via ambulance. It does not mean that I obsess about sickness and death. It means that I live on in spite of any potential concerns. And for as often as I hear “oh yeah, well you could be hit by a car crossing the street,” yes, but you may not have someone “pushing” you into the path of that car like my health does.

I don’t live my days like each one might be my last. I do go to bed each night, with things I have planned to do tomorrow. And that is different. And so far, I have had 35 years of waking up with things to do the next day since I was diagnosed with cancer.