I got to start my Monday off in one of the best ways possible this morning. A post from a fellow long term cancer survivor came across my feed this morning. She was marking her major milestone of TEN YEARS IN REMISSION from Hodgkin’s Lymphoma.
Her name is Stephanie. I have shared her story and the various stages of her survivorship in past stories. You can see them, as well as her original story, at the links below:
Stephanie’s story is one of true miracles and inspiration. I have known her for most of her journey as well as other members of her family. As cancer survivors, we know the cancer fight is not easy, and emotionally, life after cancer, can be especially difficult. But through it all, like so many others, Stephanie has just written and re-written her story, new chapter after new chapter, and like a good book, leaving us wanting more.
Now along for this ride, Stephanie has a son that she gave birth to over two years ago. And if you think Stephanie’s smile is infectious, his smile is just as radiant, and never stops. Not only do I get to see her survivorship, but also watching this young man grow into someone special himself.
Ten years is a big deal in cancer survivorship. This morning, I asked her how old she was when she was diagnosed, and I realized that I have a daughter that is her age at the time she was diagnosed. I know Stephanie’s mother very well, and saw all the struggles they went through as a family. Stephanie had amazing support through it all.
Stephanie has watched my daughters grow, so she has an inkling what her future holds in store for her. And it is definitely a great future. There will come a day when her son hears the fight that his mother went through, and why she is one of the strongest people he will ever know.
Stephanie, ten years is still just the beginning of what is ahead for you. There are so many memories waiting twenty, thirty, forty, and yes, fifty years from now. May your life continue to be blessed and your survivorship thrive.
And as I always say, “as I continue down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.”
No, I did not become a king of some small island country. This is not a crown.
This, is an artificial heart valve. To be exact, this is a replica of a “bovine” (cow) artificial valve, placed inside of my aortic valve, one of three impacted by long term side effects from radiation and chemo damage decades ago.
If you have followed my blog, you have then also witnessed the progress and improvement of technology of diagnostic and treatment of diseases, especially over the last thirteen year, and from decades ago.
But when I had my first (of three) heart surgery in April of 2008, it was known, that there were potential other issues with my heart. And what may not seem like a logical decision, to not fix everything while in there, it turns out that there is good reason not to.
The original diagnosis, was a major blockage of the LAD (left anterior descending artery, a main artery of the heart), and a considerable blockage of the RCA (right coronary artery). It also seemed that there were valve issues as well. The original plan was to leave the valve issues alone, because at the time, the surgeon, unaware of my radiation history (at that point I did not realize the correlation), the surgeon felt that the valve situation, as well as the RCA, would resolve themselves following a double bypass of my LAD.
I would later learn, that there was another school of thought to “letting things go”, basically until the time that they needed to be repaired.
Open heart surgery carries with it, many risks. And for Hodgkin’s Lymphoma survivors like me, from decades ago, treated with high dose radiation and ultra toxic chemotherapy, the surgery is not the only risk, but so is recovery. Bleeding and healing are two higher risks.
When I tried to pin down my doctor, not worried about the RCA or the valves, focusing only on the bypass, I asked, “so how long will this last?” A reasonable question, but one the doctor would not give a straight answer to, not even a ball park guess. So, after some research, looking up the method that was used to do the bypass (there are different arteries that can be used), using my mammary artery, the consensus I saw, was between 10-15 years. Which meant, at the age of 42 at the time, I would be looking at having an issue again around the time… oh SHIT! THAT WOULD MAKE THE MAXIMUM TIME NEXT YEAR!!! Not to worry, I know a secret that I will get to shortly.
So, long story short, I did recover (obviously), went through cardiac rehab, and then would discover all of the other issues created by my treatments. However, they do not apply to this post.
Just before the Covid19 pandemic hit, I was undergoing a routine follow up for my heart, and up to this point, everything had been routine. Comments were noted about my valves slowly getting worse over time, but I had been prepared to “watch and wait,” only doing something when needed to be done, something I call “the ticking time bomb” approach.
But this appointment had a familiar feeling to it. Following my treadmill test, I was being told I needed to see the cardiologist. There was another urgent situation. I was questioned why I had not said something sooner. My answer, “I didn’t feel anything wrong.” When I had my original heart surgery, I definitely did not feel well. I could feel something was wrong back then. But this time…
Well, remember the surgeon let that RCA go, thinking it would resolve on its own? Well, in a normally healthy person with just donuts and cheesesteaks as their problem, sure, it could. But for someone with cumulative and progressive radiation damage, the RCA would only get worse. And once again, I found myself at “defcon 5” and a blockage that could have had major consequences.
This time however, the surgery would be different. Scared at the prospect of a second open heart surgery, one that had increasing chances of not surviving, this repair would take place going up through my leg, trans catheter. To my knowledge, this was not something just years earlier, people with my history would not qualify for because of the complications.
And yet, that was exactly the plan, to open up the artery using a stent. Amazingly, I was sent home from the hospital the next day. Once again, went through cardiac rehab again. And of course, started playing the “how long do I have” knowing that stents only last about 10 years, never giving attention to my bypass which had now entered the 10-15 year window for my bypass. There would come a day, that I would need this stent replaced.
Again, follow up cardiology appointments continued. All appeared to be well, with the exception of the valves seemingly to worsen at a slightly faster clip. My doctor felt, at least one valve would require attention soon, as in 3-5 years.
Then Covid19 hit. The warning to me was simple with this unknown, and deadly virus. “If you get it, it will kill you.” My cardiologist was referring to one of the two major events of this unknown disease. Covid pneumonia, which with my lungs majorly compromised would certainly result in my demise, but blood clots that resulted, and with the condition of my heart, definitely lethal.
I still needed my follow up care, all the while, being cautious. Which is not to be confused with the political trope of “living in fear.”
My follow up appointment in 2020 resulted in a decision from my doctor, it was time to replace the aortic valve. Great, right in the middle of this pandemic. Not only having to deal with the virus, but then be in a building where the virus is populated with patients. A short detour however, as another scan pointed out another pressing issue, which resulted in something needing a higher priority than my valve, my carotid artery, also followed for years, was now at a stage that needed to be fixed. Though not what I want to discuss on this post, it was fixed. But then the attention needed to turn to my heart valve.
Just as my “widow maker” situation back in 2008, my symptoms had grown so much worse with my valve. Most notably, SOB (shortness of breath), a major sign of heart failure. I could barely make it from one room of the house to another and this symptom was rapidly getting worse.
The surgery would be the same process almost, going through my leg, and then into the heart itself, to place this crown-looking device, inside of my damaged aortic valve. When I came to hours later, the results were immediate relief. And again, sent home from the hospital the next day. I am currently wrapping up my 3rd round of cardiac rehab. I do still have issues with two other valves, but they are not near the level to require attention, and I have two other anomolies with my heart which I have only begun to learn about, as it is a condition that right now, does not require attention.
Today marks 3 months to the day, that this device, gave me heart relief like I had not felt in years. Sure, I am still dealing with my other health issues, but believe me, if your heart is not feeling right, your quality of life is not really what it should be. Gives new meaning about “putting your heart into things.” (Mick Jagger of the Rolling Stones went through a similar procedure back in 2019)
These devices are meant to last 7-10 years, and for someone my age, 56, that would mean likely, another surgery for the valve would be a guarantee for someone with a normal health history. And honestly, it is quite cool how they would do it, if able. You see, there are multiple sizes of this artificial valve.
Just like a child’s toy, as long as you did not start off with the smallest of the valves, doctors in theory will be able to insert yet another valve if needed, directly inside the replacement valve, which was seated inside the original valve you were born with (hence the children’s toy reference).
I am one of the lucky ones because I do have a valve the size that will allow another replacement if needed.
But here is my dilemma, math. And with the precision of a scientist tracking a meteor careening towards earth, there is a collision course likely in my future.
While my bypass has now passed the 15 year mark, and had not needed repair, it is continuing to fail again, with its current status at 40% blocked. I would estimate it is likely, to need attention, not waiting for it to reach “widow maker” status to repair, in approximately 7-10 years. Combine that with my RCA stent, and now my valve, there is the potential, if necessary, that all three things would need to be addressed at the same time, no easy fete, filled with all kinds of risks.
And if you read yesterday’s post, you will see I have another factor creeping up on my, the curse of my paternal longevity.
But I have one thing in my favor, a major goal. One that has me trying to do all the right things health wise that I can, most importantly, believing that I can get there.
Back when I first became aware of all of the late developing side effects from my treatments, there was only one thing I wanted, to live long enough to see my daughters grow. Never a doubt, my doctors share my desire, and with careful and diligent follow ups, each year becomes one milestone closer.
An 18th birthday so far. A high school graduation coming this year. Another 18th birthday next year. One in college in the Fall. Another high school graduation the following year. Another in college. Two college graduates. Two marriages. Hopefully grandchildren (at least one daughter has promised me many). These are all goals within my reach, I can feel it. Fourteen years ago, my doctor told me I was lucky to be here, it was “not a question if” I “was going to die, but when.” And that has been all I have thought about, every year, every health event I have had to deal with, and for the last two years, dealing with Covid19 all around me.
But I am doing it. And I am getting closer to my goals, one at a time.
In the movie “Free Guy”, starring Ryan Reynolds, Reynolds’ character wakes up each morning, with the exact scenario, saying “good morning” to his goldfish, Goldie. And he goes through his entire day repeating everything the same, the next, the day after that, and so on. The movie, very reminiscent of Bill Murray’s “Groundhog Day,” but with a very modern twist.
When November comes around, I experience a similar cycle, or at least my mind does. You see, in November, of 1988 to be exact, I was diagnosed with Hodgkin’s “Disease”, now called Hodgkin’s Lymphoma. I will never understand the relevance to whether it is called disease or lymphoma because both are bad, and really, neither word relates to being what it actually is, cancer.
Anyway, my repeating cycle is this, my diagnosis was confirmed just before Thanksgiving. Over the next several months, I underwent diagnostic procedures to figure out just how bad my cancer was. That’s right, over several months means this was over the holiday season.
Up until this point in my life, I looked at Thanksgiving as a time to get together with family, and the Christmas holiday for gatherings and gift giving, joyous times. But in 1988, that all changed. I was angry. And though not an actively practicing Christian, I still had my faith, which would be challenged, as we were supposed to be excited to celebrate the birth of Jesus. But I was at a crossroad. Wanting to rely on my faith, I approached my minister, to help me understand why I had to go through such a trial at one of the most beautiful times of the year. Instead, this “minister” blew me off, saying he had no time for me as the Advent season was upon us, and it was a very busy time in the church. I was on my own, turned away from a representative of the God I am supposed to believe in. I needed help. But there was no time to give me any help.
This is where I can definitely say, I lost my love for not just this holiday season, but for all holidays. I was left to struggle alone with my emotions and questions in a time of year that was all about “getting together.” But in 1988, cancer was still not a word discussed freely, or at least without the look of pending doom. I was alone.
Now, as many are frequent to offer this advice, “but Paul, that was only one year, just get over it.” Word of advice, cancer survivors REALLY HATE THAT EXPRESSION! But that holiday season, and because I was still going through treatments, the following holiday season, my love for holidays was gone. There were opportunities that I could have gained those feelings back, but without the spiritual guidance, the motives were without feeling and passion. I would just go through the motions of the holidays, so that others could enjoy the holidays.
Every year, November would roll around, and I would find myself thinking of this anniversary, wishing I could change the way I thought of the holidays.
I truly thought that once my daughters came into my life, my feelings would change about the holidays. My daughters were innocent, and the joys and expressions each Christmas day were truly genuine, how could someone not feel that, want that? As I had done prior to my daughters, I found myself needing a distraction from the thoughts that annually were in my head, “this is the time of year, the worst days of my life,” which of course I could no longer claim, especially blessed with my daughters, but this feeling was there.
I found myself working EVERY holiday, not just Christmas, but all holidays, including Father’s Day, putting off the morning gift giving until I got home from work. All the other holidays and my birthday, soon meant nothing to me again. And even with divorce, in an attempt to keep conflict to a minimum when it came to custody, I surrendered ALL holidays to their mother, instead opting for days close to the holidays.
My daughters do not know about the struggles I have during this season. All they have known, when they were young, I was working when Santa delivered their presents, and older, after the divorce, they will see me after the holidays. My daughters know about my health struggles because of my cancer treatments from 33 years ago, but very little about the beginning of this journey.
That’s right, it was 33 years ago this month. I officially count my survivorship at 31 years, recognizing the day of my final treatment as my anniversary date, others their diagnosis date. 33 years is nothing to sneeze at. I have gotten to witness so much not just in the advances of treating cancer from better diagnostics and treatments, but my gosh, I could not be more blessed to have two of the best children anyone could ever hope for.
There is still hope, and I really do want to be able to, learn to love this time of year again. One of my daughters promises “lots of grandchildren.” In 2008, I was near death with a heart condition caused by my treatments, and I never thought I would see my daughters even graduate, yet, here I am. I have goals that at one time were unthinkable, and as I approach each milestone, my hope continues to grow. With one daughter graduating this school year, the other the next year, my milestones are simple, college education for them, hopefully marriage, and yes, grandchildren. I am that close, and I can see it.
My life changed in November of 1988, there is no doubt. My cancer does not define who I am. But I am who I am today, because of my cancer. I am eternally grateful for four decades of cancer survivorship and I will be grateful for hopefully the years to come. And it is with that hope, and the milestones I am looking forward to, that perhaps I might find that peace finally in November and December being “the most wonderful time of year.” Better late than never.
American Cancer On-Line Resources
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Paul's Heart 