“If you are going to get a cancer, this is the one you want to get.” I was actually told that more than 35 years ago when I was diagnosed with Hodgkin’s Disease back in 1988. Though the statement made my blood boil, I initially missed the doctor’s follow up sentence as to why I was so lucky. At the time, Hodgkin’s was considered one of the most treatable cancers, with a remission rate around 85%. Now to be clear, that 85% is to make it to the five year mark. After that, you were on your own. Today, the success rate is even higher, in the low to mid 90’s, but again, that is still for that five year mark. In the 35 years since I was treated, both treatments that I underwent, extreme high dose radiation and the chemotherapy regimen of MOPP-ABV are no longer used, using safer treatments, in lesser amounts, with better results.
(photo courtesy of Amazon.com, available $15 at the following link: https://a.co/d/2JRZsZ3)
In the 35 years since I was diagnosed, so much information and resources have come out about Hodgkin’s compared to NOTHING. Of course, I wrote and published my first book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor”, detailing my life from diagnosis through treatments, and the decades that followed. Of course, I began writing “Paul’s Heart” the blog more than a dozen years ago. I am even publishing TikTok videos on my history with Hodgkin’s @PaulsHeart2022 .
Social media has played quite a role in getting information into the hands of new patients and survivors, more than from the big players such as the American Cancer Society and the Leukemia And Lymphoma Society. And today, there is an organization committed to Hodgkin’s Lymphoma specifically, with accessability around the world, Hodgkin’s International.
There is so much information available for new patients and survivors, newer and older. Medicine has finally caught up with discovering the need to follow up patients beyond the five year mark. Medical facilities have created survivorship clinics to help patients deal with any late side effects from treatments that have developed. And of course, perhaps the best of all, this world wide web has given the opportunity for patients and survivors to meet others who have gone through what they did, not just online, but in person.
The above photos were from a symposium hosted by Hodgkin’s International, bringing together patients, survivors, doctors, and other medical advocates, to talk, share, and discuss the issues of Hodgkin’s Lymphoma. I was even honored to be one of the panel speakers (I am actually seated next to the doctor who had taken care of me most of my survivorship, as well as another of my doctors at the end of the table).
Yes, a lot has happened over 35 years. Perhaps you have been reading “Paul’s Heart” from day one, and perhaps have read my book. It is my hope with all the efforts that I have shared, that somehow, I have providing you hope and inspiration.
With that said, there are other “awarenesses” this month, of course related to Hodgkin’s Lymphoma. Hodgkin’s is considered a childhood cancer, and a blood cancer, as well as Lymphoma. And of course there is Non-Hodgkin’s and Leukemia. Chances are, these 35 years later, back when I knew noone who had ever had Hodgkin’s, your life has been touched by someone with any one of these cancers. Like I said, treatments are successful, but not perfect. We still need them to be safer, and 100% successful.
If there is one thing I have been constant about on “Paul’s Heart”, it is sharing opportunities and stories of inspiration when it comes to cancer survivorship as I hear about them. There has never been a shortage whether it be recognizing milestones such as 30, 40, or 50 years of remission, or overcoming concerns about future events in life, such as having a family as a cancer survivor. But in all my years of survivorship, 34 years in remission, 35 years of survivorship since I was diagnosed, the following story from start to finish is one I had not only thought I would ever see in my lifetime, but for sure, not expect to see a comeback as strong.
I first wrote about Jessica, a fellow long term Hodgkin’s Lymphoma survivor, just over five years ago (Jessica, The Mermaid That Beat Cancer 4 Times – July 10, 2019 post). In November of last year, she suffered a “fatal” heart attack, surviving the event due to the quick thinking of her clients during their training session, and multiple rescusitations by medical staff. Her only chance of life, and with quality, was going to be a heart transplant, an effort so rare among my fellow Hodgkin’s survivors. Jessica would become the first Hodgkin’s survivor I personally knew, to be given a new heart (there were a handful of other long term cancer survivors who had successfully undergone heart transplants). On December 8th, I wrote A Miracle For Jessica followed by a post on December 10th called Jessica – Marching To A New “Beat”, with the heart transplant having been completed on December 9th.
Well, as is often the case of other survivors I have written about here, I have another update on Jessica.
(photo courtesy of Jetwaterfitness)
This picture is of Jessica, is just eight months with her new heart. Barely nine months ago, she suffered that heart attack, and here she was participating in a very special activity.
(photo courtesy of Jetwaterfitness)
It is called “Dash To Paris.” It is a special athletic tour combining running, swimming, and bicycling from Milan, Italy, to Paris, France, just in time for the opening ceromonies of the Para Olympics. The mission of the Dash To Paris, is to demonstrate support for those that want to be involved in athletics regardless of their physical limits or opportunities.
No participant could have met that description as appropriately and currently as Jessica. Despite a history of four battles with cancer, and later in her life, dealing with late developing side effects from the treatments used to save her life each time, Jessica was committed to physical fitness. She even worked as a physical therapist and personal trainer, which likely not only played a major factor in surviving this last health emergency, her recovery, but enabling her to train for this event. Jessica’s goal was to join the Dash To Parish for the last mile, and finish the Dash.
Joining Jessica was another fellow long term Hodgkin’s survivor, and Jessica’s sister, both who were by Jessica’s side following the heart attack. In fact, her sister was by her side during the last mile.
(photo courtesy of Jetwaterfitness)
There is so much to be inspired by Jessica’s effort and determination. Jessica is more than aware how different the outcome of her story could have been. Most of her fellow survivors are all too aware of how difficult and unforgiving our health issues from our cancer treatments can be. Many of us have seen doctors break in spirit, unable to help one of our survivors any further. But Jessica’s story is not only a special one, it is clearly one that is going to keep adding chapters.
Congratulations Jessica on not only this achievement, but your continued improving health. I am sure that can speak for the majority of your fellow survivors, we are all so proud of you!
I make no apologies for being a proponent for “Medicare For All” or universal health care. I do not believe that health care is only for the privileged and instead, is a right for every American. And I believe that during the Covid19 pandemic, our country proved that universal health care could work as it became necessary to deal with the worst health crisis in over one hundred years.
Bring up the fact that the United States is one of the only industrialized countries, and wealthiest that does not provide universal health care, and antagonists are quick to point out countries such as Canada and England and their most common complaint, wait times to see a doctor, and blaming universal health care for that. Well, please allow me to introduce myself.
I have had just three primary care doctors in my six decades, the current doctor, forty years now. I will admit, the incorporation of the hospital network has made it challenging to “seeing only her,” but to this date, I have prevailed. When I have needed to see her, I have gotten to see her, with relatively littley delay.
Of course, seeing my primary care doctor used to be fairly easy and routine, even during my days of being treated for Hodgkin’s Lymphoma back in 1988. But since my body developed late side effects from the treatments used to put me into this long term remission that I have enjoyed, I now have to see doctors other than my family doctor. In fact, I see at least seven different specialists to cover the more than a dozen diagnosis that I live with. I have done my part to make sure that they are all within the same “network,” making communication between all of my doctors as easy as possible. This is important especially when trying to make my appointments which has become like trying to assemble a jigsaw puzzle trying to work out all the appointments as well as the multitude of tests that need to be done for each appointment.
So today, as I tried to wrap up my scheduling for next month, I had two providers to schedule, as well as re-schedule two appointments that were being changed on their end. “The first available is in March,” went the first phone call. “The earliest appointment she has available is April,” went the second call. OF 2025?!?!?! But we do not have universal health care. These delays only happen with countries that have health coverage for all, right? So we are no different than other countries now with not providing more efficient health care in a timely fashion. Yet because our health care is for profit, between the insurance companies and the hospitals and medical facilities, we pay the most for health care than all of the other countries who have universal health care.
Brazil offers universal healthcare to everyone. It is actually written into their constitution as a right. In 1912, Norway, known to be one of the healthiest countries in the world, was one of the first countries to have universal healthcare. The United States? Crickets chirping.
Make no mistake, I do believe that the United States has some of the best medicine and skills, just as many other countries. But at one time, health care used to be affordable. Of course, I did not realize it because I was only six years old when the Health Maintenance Organization Act of 1973 was signed into law by President Richard “Tricky Dick” Nixon. The concept of the act, was to encourage alternatives to tradtional medical care and costs through companies called Health Maintenance Organizations (HMO’s). What these organizations did, was put “pen-pushers”, not the doctors who saw the patients, in charge of the health care. HMO’s would determine what tests and medicines would be covered, and if you needed something more expensive or necessary, the patient would have to waste valuable time applying for pre authorizations and likely appeals. If dealing with cancer or some other serious health crisis, this often meant the difference between life and death. HMO’s also restricted who you could see for your health care, which meant if the only doctor in the world who knew how to handle your health situation was not a participant with the HMO, you could not see that doctor and had to settle for the pot luck of anyone else. With the development of these HMO’s, profits became the driving force behind them, behind the insurance industry, and of course hospitals and medical facilities. Of course, many doctors were against this interference with patient care.
And the fact is this, a simple tax amounting to probably around $2,000.00 per person per year to cover universal healthcare, is much less than the $10-20,000.00 per year in personal insurance paid out. Look at that again, $2k or $20k, for the same access to health care. But there are two boogey men here, insurance companies, and those who do not want government in charge of their health care. Again, this is not the government telling you what to do with your health, these people just do not want the financial connection with the government and are willing to spend up to $18,000 more per year to make sure that does not happen. And if that means eventually that they end up without any coverage at all, at least the government did not help them. This is called “cutting your nose off to spite your face.”
There is a reason I am fired up today about this. One of the issues I deal with as a long term cancer survivor, is an increased risk of colon cancer, as well as esophageal cancer. And the precursor to a diagnosis, is the discovery of polyps, which need to be removed before they turn cancerous. Sounds like a good idea, right? Two of the surveillance appointments that I undergo are colonoscopies and endoscopies due to the treatments I received (radiation and the chemotherapy drug Procarbizine). The frequency of these tests is determined by the results. Typically, not everyone even without a history of cancer would like ever need an endoscopy, but colonoscopies are often recommended every ten years after a certain age. But with my history, and the results of my scopes, polyps every time, both of my scopes are ordered more frequently. Again, the goal is to remove polyps before they have a chance to turn cancerous. This is a good thing.
I have had these scopes done many times, usually every two to three years, and ordered by my lead doctor in my survivorship care. But something changed two years ago, as the prescription for the scopes was ordered, I was denied the procedures at the facility that I had it done at previously, ordered by the same doctor, as I was not a patient in the Gastrointenstinal Office. Though it did not seem to matter in the past, I thought, okay, I should have a GI doc anyway, made the appointment, which took three months, but then she said “not yet” to the scopes, regardless of what my other doctor wanted. So here I am, two years later than the order of the tests, still not completed, I went to make the next appointment to see her, and would expect to have the scopes scheduled as well, but then was informed, “not available until April.” OF 2025!!!!! And then, that is not even to have the scopes done yet which will put me to three years passed due at that point, so I can only imagine how many polyps I will have, but rather, will any be cancerous. And this is a legitimate concern. In recent weeks, several of my survivors have received news of either cancer, tumors, or other issues related to their scopes. In my long term survivorship world, many of my fellow survivors have had to deal with colon or esophageal cancers. So my anxiety right now is real.
We need universal health care. We need to be able to see whoever we need. We need to be able to go wherever we need. We need to be able to get whatever tests and treatments we need. It should not bankrupt us. Health coverage should not be a privilege. Healthcare should be a right, just as it is in nearly every other industrialized country. Using the arguement of wait times no longer holds water, because right now, corporate medicine in the US is doing just that. Enough is enough.
American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues
American Cancer On-Line Resources
Internet support from peers, caregivers, survivors, and professionals in several hundred types of cancers and related issues
Paul's Heart 