Over the last couple of weeks, I have shared two posts pertaining to cancer survivorship. One dealt with the acceptance of a shortened mortality. The other dealt with the realization that to survive cancer, and live after cancer, the survivor must learn to advocate for themselves. Well, here comes the third and final post in this series. And I want to stress, though the post clearly focuses on Hodgkin’s Lymphoma, as more and more cancers find cures, which will also mean new and different long term survivors, the strategies necessary to navigate the next several decades, are the same. So please, read on.
Several years ago, in 2016, an organization was created, to help Hodgkin’s patients survive, and live after cancer. Unlike the major cancer organizations, Hodgkin’s International focuses primarily on the Hodgkin’s Lymphoma community. However, like I said, in much of the information and guidance provided, it can be beneficial to other cancers as well. But for being one of the most successfully treated cancers, it hardly gets any attention or focus, and those who survive it, get even less. Which is where Hodgkin’s International comes in.
This meme is so powerful. Yes, it is from Michael J. Fox, who is courageously fighting Parkinson’s Disease, but the quote actually applies in many circumstances. When it comes to Hodgkin’s International, the organization is led 100% by the very experts who have survived Hodgkin’s Lymphoma. The seven board members and lone staff member, are all long term survivors of Hodgkin’s Lymphoma, like me, and like me, deal with various late developing side effects. Like me, at one time or another, there was struggle trying to find care and answers for unexplained health issues that were coming up. Like me, many face emotional struggles as the physical issues pile on. Who better to provide information and support, than those who have “BTDT” (been there, done that)?
Look, as I have said many times before, no one gets it more than someone who has dealt with cancer before, when you are told you are in remission, and you are declared in remission, and you complete enough follow-ups, you want to take off faster than the “roadrunner” racing off from Wile E. Coyote. While I understand this position, it does leave me concerned. I know, all anyone wants to do is get back to the life that they led before cancer. And you can for the most part, most likely. But there are things you have to realize, and though not guaranteed, the possibilities do exist, there could be things later in life that develop health-wise because of the treatments that gave you that “cure.”
So, regardless if you are a survivor who has had enough when you are given the “ok” sign, or someone who is already dealing with health issues, the point is, to be aware of, and remember, Hodgkin’s International. And for the record, why international? Because there are survivors of Hodgkin’s all over the world, and many of us are connected via social media peer groups. Many without the information that I want to share with you today.
So, without further adieu…
hodgkinsinternational.com
On this website, you will find a variety of resources. It should be noted, it is constantly being updated. The great thing about my fellow survivors, is we share information, whether it be diagnostics, late side effect information, which specialist to see, or how to find a survivorship clinic, because this part of survivorship is relatively unknown, it is taking those who know, those who have the personal experience, to build this website.
One of the unique things offered on the Hodgkin’s International website, are video presentations by patients, survivors, and medical professionals. There are personal testimonials of survivorship. There are explanations of the various health issues that are experienced, and many times, recommendations of what to do about them. Recently, in what was a “two for” presentation, we (survivors) got to hear from an oncologist who also happened to be a long term survivor of Hodgkin’s Lymphoma. Again, I want to stress, you can learn how to deal with other cancer treatments similarly by learning about the treatments used, and the need to understand how they can affect the body later on in life.
Then of course, there is the information that can be found on the website, from the various late effects possible, both physical and emotional, research articles, and other literature. The website continues to add the locations of known “survivorship clinics,” facilities that at least recognize late developing side effects from treatments. At the very least, you can find a “survivorship plan”, which includes research articles, and other helpful information for you to take to your primary care doctor, if that is your only option available. This is all verified and confirmed research information, by those who have studied late side effects as well as Hodgkin’s Lymphoma.
And Hodgkin’s International makes this all easy and convenient for you. You do not even have to just “bookmark” or save the website location. By signing up for the monthly email, you receive announcements about upcoming video conferences discussing topics like mentioned above. You will also be able to read stories from other survivors.
Again, like I said, if you are a patient of Hodgkin’s Lymphoma, any cancer really, and you are like I was, wanting just to move on, just remember, that if a time does come, and you find yourself, dealing with unexplained health issues, Hodgkin’s International is the place you want to begin looking for answers and support. I say this without reservation, there is no other organization out there, even the big ones, with the commitment to long term cancer survivorship as Hodgkin’s International. And why is that? “People living with the conditions are the experts.” Thank you Michael for pointing that out.
This post was going to have a completely different direction when I started. But a tragic local headline served a stark and horrific reminder instead.
I wanted to talk about traffic and driving experiences. I am one of many parents who have children who have delayed getting their drivers licenses, a right of passage growing up. Where I live, the area seems to grapple with a loss of gravity, as the nearly daily accidents involve some sort of rollover of their vehicle, including from either a straightaway or pulling out in an intersection. No, when I originally came up with this filler piece, it was nowhere near as heavy as I write it today.
The picture is a screenshot from my phone, credited to local news agency, UC Breaking News – SWFL. The headline reads, “13-Year-Old Boy Killed In Crash.” Again, as I mentioned, daily car crashes here are not uncommon, and it seems that deaths or at least severe injuries occur nearly every day. There were not many details released. A car, driven by a 17-year-old girl, had three passengers, two aged 13 years of age, and a 10-year-old. She attempted to make a left turn, thinking she had the right of way, or at least enough distance, and instead was hit by another vehicle, being driven by a 30-year-old father, and his 3-year old child. This turn was attempted at night. The accident is being investigated. But one definite fact has been reported, a 13-year-old boy was killed in the accident.
Of course, social media does not disappoint, with all the know-it-alls and just plain assholes, offering their commentary and disrespectful, hurtful comments. A lot of discussion needs to be had about this accident for sure, regardless of anything that comes out of the investigation. One thing that was confirmed, all passengers and drivers in both vehicles were wearing seatbelts, or this would have been much worse.
As a teenager, all I wanted to do was drive. The day I turned 15-years-old, I could not wait to rush out and get my learner’s permit. With a birthday occurring in the wickedest time of the year weather-wise, Winter, I would learn to drive in extreme conditions not experienced by my friends born in April or July. The furthest thing from my mind, was ever getting into a car accident, a clear case of the “it will never happen to me.” And for over 35 years, I kept that record in tact. That is right, that record came to an end, five years ago.
In a scene reminiscent to the story written above, only I know my details accurately, I had a left turn arrow, and was actually following behind a police cruiser who was also turning. But a young woman driving a Challenger in the opposite direction, was approaching, clearly without a green light, through the intersection. The police officer had just completed his turn. She was coming straight at me. A last-second maneuver, a hard turn left, turned my eventual collision from head-on, to her hitting my right passenger side. I do not recall much of the accident other than the sound of the impact. I remember the officer, who had turned around, witnessing the impact in his rear view mirror, asking me if I was okay. I was a little woozy, but I did not seem injured.
I deal with flashbacks when I have to drive that intersection, but otherwise, I had begun my accident-free streak again from that point on.
Having two teenage daughters, I knew there would come a day, that each would want to get their driving licenses. And why shouldn’t they? As I said, it is a right of passage. The fact that it was something that should happen, did not take away the many memories that haunt me of others that I knew, or had heard about, involved in car accidents. Admittedly, my memories really only hold on to those killed in car accidents. As a teenager myself, there were so many.
The first occurred during my senior year, a friend was killed driving across a bridge known for being hazardous, especially during inclement weather. Another friend, killed just after graduation in a vehicle purchased by his parents as a gift. The most personal for me occurred when my first ex-wife was hit head-on, on a dark two lane road. Driving a Geo Storm, she was hit by a Ford Crown Victoria. Somehow, she survived, hurt badly, but survived.
But these personal memories definitely impacted my motivation, rather, lack of motivation to encourage my daughters to seek their drivers licenses. I used all kinds of rationale from not necessary, to expense, and even relied a bit on their own lack of impulse to pursue the process. I would tell my daughters, “you know, by getting a license, you will be asked to run errands all the time,” capitalizing on how they often did not like being interrupted or, “if you want to borrow the car you will need to do this,” blackmail, the exchange simply not worth the inconvenience.
I have driven all over the country. And as I have, I constantly changed my opinion of which places were the worst to drive, whether road conditions or drivers. Along the way, Florida held that title for me once before and has regained my opinion of worst place to drive again. As my picture above shows an intersection in China, the photo was taken by me, that was what I thought was the worst place for traffic. Having witnessed all types of transportation, from tractor trailers and buses, to cars, to motorcycles and mopeds, to bicycles and pedestrians, it was clearly a “circle of life” situation with the strongest surviving. I had even witnessed an accident with someone opening a car door into a cyclist who had been trapped in her lane of travel. It was a sickening thud.
Here where I now live, in south Florida, there is not a day that goes by, there are at least two or three accidents, one of them severe, at least every other day involving a death. If it involves a car, there is likely a rollover involved, which does not make any sense from the lack of curves in the roads, and in most cases, traffic does not move that fast because of the amount of cars tying up traffic. Then, just as in China, you have all of these other vehicles on the road, not just trucks and buses, but because this is a tourist area, there are these funky vehicles, three wheelers, electric rickshaws, vespas, all risking their lives having less physical protection around them in the event of an eventual crash. And of course, pedestrians and cyclists are constantly getting hit by vehicles. Did I mention aggressive drivers?
And so, we have a tragedy like just occurred. There needs to be discussions about the circumstances. I know we are a country of people that do not want to be told what to do, but dammit, when we do not use common sense, such as drunken driving or texting while driving, something needs to be done to protect the innocence.
My biggest fear next to my own daughters driving, has always been them, being driven by someone else. Of course, them driving the family car, we would be aware of. But going for a ride with a friend or classmate, as the expression goes, “what we don’t know…” Well, my daughters as of now, still do not have their licenses, and it is likely they will not anytime soon, because they have realized they do not need them at their current stage. They will get their licenses eventually, but right now, they do not need them. They know this. That means, their friends do the driving. I have no idea when or how often this happens. And yes, they are to offer gas money. But as I pass cars filled with teenagers today, I see my biggest nightmare, the passengers all carrying on inside (and outside) of the vehicle, while the driver focuses on the roadway.
This tragedy is just that, a tragedy. What was a fun night for a family, has now become a nightmare. There will be lots of “coulda-woulda-shoulda”, and changes made in families who knew them, and perhaps by others who heard of the accident. But in this area particularly, the county needs to do something. Aggressive and reckless driving (such as drag racing) is at an all time high. This is not the first time a child’s life has been lost on our roads here. The first thing to dealing with a problem however, is recognizing there is a problem. And while authorities may admit to a problem, they do not publicly publicize it, you know, it is called “awareness.” If you don’t talk about the problem, it does not exist, right?
My last post, dealt with how long term survivors of cancer, in particular, Hodgkin’s Lymphoma, look at their survival longevity, or rather, the shortening of their mortality, due to the late developing side effects from the treatments that gave them remission. Though I would not normally like to do two “heavy” posts pertaining to survival in a row, I need to publish this post, while my memory is hot.
I was attending a Zoom conference yesterday, as I often do. The guest speaker was an oncologist who was going to speak about long term side effects. I must admit, I did not pay attention to the details of the speaker prior to the Zoom, just the topic. In just moments, I learned that I had a lot in common with the good doctor, most notable, he was a long term survivor of Hodgkin’s Lymphoma himself. Compared with other Zoom conferences I have attended, this was the first time in a long time that I can recall anyway, hearing of an oncologist speaking from personal experience. If I am being honest, I really do not know any doctors personally who have had to deal with cancer, or at least admit it. I was anxious to hear what he was going to say.
The doctor continued his introduction. Turned out, we had other factors in common with each other, especially when it came to Hodgkin’s Lymphoma. He was treated back in 1989, the same as me. He was a few years younger than I was, which would still make him a few years younger than me now (though you would not be able to tell that from looking at both of us). We were both survivors of over 33 years. Our treatments were similar in that we both had radiation treatments, but his chemotherapy regimen was partially different than mine, he getting only half of the chemo drugs that I got. There were other facts of similarity, but you get the idea. We had a lot in common.
About half-way through, the doctor finally got into long term survival issues. Again, he spoke of things that I was already aware of from particular body systems and the risks faced for complications and secondary issues. And then he dropped this bomb on all of us attending:
“You need to advocate for your own care.”
If you have followed “Paul’s Heart,” even just recently, you know my efforts to bring attention to the need for survivorship care for those of us treated twenty, thirty, forty, even fifty years ago. Some of us have been lucky enough to find doctors who have learned how to care for our particular issues, others sadly have not. But as each day passes, all of us hope that we get one step closer to a universal recognition of, and protocol for, dealing with late side effects caused by treatments, radiation and/or chemotherapy, for Hodgkin’s Lymphoma. And as one who has access to the specialized care necessary, I want to believe, that there will come a time, that oncologists all over, will finally be honest and open with their cancer patients, and tell them the truth, “yes, we can get you into remission, but you are going to need to be followed up for the rest of your life, not just to make sure that your cancer stays in remission, but should you develop any late side effect, it can be dealt with sooner than later.” Sure, not everyone develops these issues, but enough do so to warrant the protocol for lifetime follow-ups. There are enough of us long term survivors to prove this need.
As if stuck in a time loop, I “heard” in my head, the doctor repeat and repeat, “you need to advocate for your own care.”
Nope, even though it was just a phrase now stuck in my head, no matter how many times it played, it never got better hearing it.
Now, there are some in our survivor/patient peer social media groups who have been on the receiving end of me urging them to “advocate” for themselves in pushing for a more urgent response, or quicker scheduling, or to find an answer for what is creating a health issue, not typically found in someone of a certain age with no other attributing factors. Don’t let the doctor tell you they have no idea. Make them figure it out, or at least point you in a different direction to help you find an answer. Typically, I encourage fellow survivors, a primary care doctor is likely going to be a good advocate for their patient, as they know the patient best. And when it comes scheduling, you try to schedule a nuclear stress test versus having the doctor make the call instead. See who gets scheduled sooner. I will give you a hint. The only reason I am alive today, is because my primary doctor of now nearly forty years, made that call, fifteen years ago, second week of April, that three days later, surgeons were saving my life performing emergency open heart surgery, because of late effects I had no knowledge I had. If I were to have made that call, at the young age of 42, that test would not have been scheduled at best, until three months later, or longer if I had to go through the appeal process, because that test made no sense for someone my age. But you get the idea.
“You need to advocate for your own care.”
The doctor went on to explain what he meant, exactly what we survivors have been doing for decades. We, the patients, have had to learn the potential side effects that can come up on our own, and then push doctors to take our word for it, get the tests ordered that will discover the issue, and get it fixed if possible. The reality of the possibility of walking into a doctor’s office, complaining of shortness of breath, as an adult in their forties, and have a doctor only do an EKG in his office, and then tell you “everything seems okay” except for the fact, you don’t feel okay, is all too common. You need to advocate for yourself, especially after reading this post, and the next one to follow (likely in a week or so – I am waiting for news on a particular web site), and use the information that is available to you, and find a doctor who will listen to you.
But why is a patient being put in this position? If there are so many of us survivors dealing with these issues, and clearly there are some doctors and facilities out there who can take care of us, why isn’t this type of care more common? The doctor offered his answer.
“Because we are going backwards in our healthcare.” Whether it is because of meddling insurance companies (or as I refer to them as greedy pen pushers) or medicine being privatized or incorporated, there is either just no interest or not enough profit to care beyond the “cure” for cancer. Things get too complicated with our conditions, and answers are just too costly with all of the tests that often need to be run on us survivors. Though I have not run a tally for all of my surgeries and emergency room visits, and the dozens of tests I have gone through over the years, I know if I just take the big things I have gone through, those alone would total well over a million dollars spent caring for my medicine induced health issues. I would not be surprised if I were in the three million dollar range at this point.
That’s right. And we end up right back where we started, with the doctor’s quote, “you have to advocate for your own care.”
I heard from several survivors after my last post and this Zoom, all saying the same thing, “is our survivorship all in vain? Is being treated successfully for cancer the only objective only to be left with these late side effects, that no one understands or can figure out? The rest is on the patient?” I do and I do not believe that. I do think this is where we are at in medicine these days. Gone are the times when doctors took their own initiatives, followed their guts, cared more about their patients than profits and what higher-ups expected of them.
I am long enough in the tooth to remember times, when doctors were allowed to care about their patients, and did. I have had my current primary care doctor nearly forty years. I have watched her take over my prior doctor’s practice, then take on a couple of practicing partners (including her husband). Then came the big take over by a hospital network, and little by little every year, this incorporation has taken over more and more of her practice. It is barely recognizable anymore if you just casually walked in for the first time. But when I get to see her, I can still see the same doctor who has given me the best care she can possibly give, regardless if her hands now appeared tied by corporate (she is not even allowed to have her kids and grandchild’s photos and school artwork hanging anymore – talk about a sterile looking office). All this time, she has been my greatest advocate. Sadly, a time will come, she is a few years older than me, and she will step away, and I will have to continue to fight this battle on my own.
There is no reason not to want to be cured of cancer. There is no reason not to want to move on and live life after hearing the words, “you are in remission.” But it is a totally different thing, to be aware of the fact, that what treated you, has the potential, not guaranteed, but potential, to cause problems later down the road of remission. You have two choices, and both are the right ones. Go ahead, push onward, forget that cancer was ever a part of your life. Avoid doctors because you feel great, and you do not want the negativity, or the reminders, of your past. Forget that you know, the risks are there. You know they are there because you are either reading this, or you know someone else who has dealt with these late effects. If you choose this path, and you end up being an “unlucky” one who faces something unexplainable for your demographic, all I ask, is remember what you know, what you have been told. We will be here to help support you, guide you, and advocate for you, should you end up having a late effect.
To be honest, this is exactly what happened with me. Upon learning my main artery to my heart, and valves were impacted by radiation eighteen years after my treatments, and my current cardiologist and surgeon really not schooled on this issue, I remembered fellow survivors who had gone before me, and I went running to them, for help in finding the care for these treatment related issues that I was now going to need, the rest of my life.
Or, your second choice, you will have regular follow-ups with your oncologist. The appointments will likely be every three months for the first couple of years, then every four months, every six months, and then annual. And you will reach that five year magical mark you have heard everyone talk about. And your oncologist will likely tell you, there is nothing really more to do. But you have read this post, and other posts, and instead of waiting to be told you have a major condition that has been building for years, and you are about to die, you learn about the treatments that you have gone through, research the potential (not guaranteed) side effects, and encourage your primary care doctor, “just to keep a look out for these things.” Living your survivorship this way, does not mean you are still carrying the specter of cancer on your shoulders. Not at all. If nothing shows up during these long term follow-ups, then those appointments give you peace of mind that all is well. But if something is discovered, it is found sooner than later, giving the best chance for corrective actions. Seriously, who do you think has it better? Me, who has a regular cardiologist, constantly watching all my numbers, and making decisions when things progress? Or somebody who does not see a doctor regular, but is walking up steps at a baseball game, and collapses from a heart attack that he had no idea his heart was in that bad a shape?
I get it. The stigma of continuing to be cared for as if doing so will actually manifest issues, is real. But in the end…
“You need to advocate for your own care.”
There will be a final part to this unintended series. And it will benefit all cancer survivors, not just Hodgkin’s Lymphoma survivors. I am waiting on a particular announcement, but the post is ready to publish as soon as I hear it, hopefully in a week or two.
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Paul's Heart 