Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “December, 2023”

A Christmas Message


I have so many wonderful memories of Christmas’s with my daughters such as this one, their first Christmas together. For the first ten years as their father, I had found a way to once again find joy in the holidays.

Of course, as many families find themselves, in divorce, new arrangements need to be made. Knowing how difficult it could get in arranging time with the holidays, and with holidays not really having any personal importance to me, I made the decision to avoid any potential conflict, and instead chose time around the holidays to have my daughters visit.

I would see my daughters in between Christmas and New Year’s for the most part when it was possible. The feeling of Christmas was still in the air, and of course, there were still presents to be had. For me, it was all about getting to see my daughters.

This year, more so than any other year, I have many friends who are coming to this holiday, with major changes in their lives through loss, whether by divorce or death. This will be the first Christmas that they are going through, I purposely chose not to use the word “celebrate” as I’m not sure that they feel this particular year feels as such. My thoughts are with each and every family just trying to get through this year.

And then there are those who have faced major health issues (some both family loss and health), and are overcoming those challenges. So many of my fellow Hodgkin’s survivors have undergone procedures this year, including a heart transplant, the true gift of life. For all of those I am sure this is definitely going to be a special holiday.

This holiday season did not turn out the way that I had hoped for sure. But with my daughters both adults now, there will come a time when I get to seem them on Christmas Day once again. And until then, I will just continue the holidays with them as I have these last ten years, with the aid of technology.

May you and your families have a wonderful Christmas.

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.

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