November is Diabetes Awareness Month. This is another box I check when it comes to my health as I am a type 2 diabetic. I was not always this type of diabetic. It was something that developed over the last many years of my survivorship, in fact, I go as far as connecting it to my late side effect issues from my treatments for Hodgkin’s Lymphoma. Type 1 diabetes did run in my family, but not type 2. And it was not until about fifteen years ago, when type 2 diabetes appeared on the radar. I am always of the mindset, if it was not something I was born with, does not run in my family, and happened post-cancer, then it gets connected to that period in my life. Honestly, I am not really about the “why” stuff happens, I prefer to be “what do I need to do about it?”
What is the difference between type 1 and type 2 diabetes? I am not going to get lost in the weeds explaining the technicalities, but with type 1, the body has a lack of insulin caused by the body’s own immune system destroying insulin-producing cells, causing that shortage. As a result, type 1 diabetics need to monitor their blood sugar and give themselves insulin shots. They also have strict diets as well as other behavior recommendations such as exercises and avoiding certain vices. A type 1 diabetic knows they are type 1 as their symptoms are better recognized, but also severe and quick.
Type 2 diabetes is a resistance to insulin, the body either does not make enough insulin, or it does not process the way it needs to. A type 2 diabetic does not need to do insulin shots necessarily, but should monitor their blood sugar. Side note, as I have written before, this is one thing I am unable to do, as I have written about previously and recently.
Both types of diabetes carry their own potential issues ranging from cardiac to circulatory, optical, and so on. Cardiac can lead to heart disease, circulatory can result in amputation due to “gangrene”, and a condition with the eyes called diabetic retinopathy, where blood vessels in the eye become damaged, causing issues from blurryness to floaters, and possibly loss of vision.
As I mentioned earlier, I attribute my type 2 diabetes to my late effects from treatments. It was about fifteen years ago when my doctor began to monitor my “A1C”, which measures the blood sugar levels over the last three months, so an average of what diabetics check daily. Now here is the thing about the A1C with me, I thought I was being smart. I learned early on, that I could impact my blood tests, when fasting was required, by avoiding things such as cholesterol and sugar, through the week before the blood test, and have great results. The A1C put a stop to that, because while I could have a great blood sugar reading, the A1C proves otherwise.
Initially, my number was around 5.5, which was considered normal, but close to pre-diabetic. Over the years, my A1C would creep higher capping off six years ago at 9.0, full type 2 diabetic. The pancreas is one of the few body organs in me that has not been studied for impacts from my treatments, though I do see an endocrinologist. The loss of my spleen from the staging process of my cancer as well as my thyroid being impacted from treatments, also caused issues with my metabolism which has likely contributed to this.
There are other factors that impact the A1C, such as activity level (exercise), weight, diet, and stress. Medication was also prescribed for me, some that I could afford, some that I could not. I currently take two pills which have lowered my A1C somewhat, while not a great impact, lower is better regardless. Exercise for me is limited to walking. I have lowered my weight to its lowest in thirty years, but I have plateaued as I often do when I get to this level. I do not eat a lot of sugar and the one vice I did have, Coca-Cola, I have all but given up. I do not drink alcohol, do not do drugs, and I don’t smoke. And in recent years, I have finally managed to reduce my stress by 95% and how I respond. My result last month showed my A1C now at 7.4, not great, but going in the right direction.
As for my eyes, I see an eye specialist as well. Nothing has been decided on the retinopathy, though treatment has been talked about in the future. I do have damage to my eyes from the high dose prednisone that I was on during my chemo. And most obvious, I can tell my vision is getting worse.
From the cardiac standpoint, I seem to be holding my own. All my “bionic” repairs to my heart are holding their ground, though new diagnosis have come, but with everything else I have done, I am going in the right direction. I do plan on getting my A1C back into normal range within the next two years.
I really cannot explain it. I can normally feel what time of year it is as Thanksgiving approaches. It is a time that I normally dread. For whatever reason, this year feels different.
Keep in mind, the details that I am going to write, are as fresh and clear as when they occurred, back in November of 1988. I was twenty-two years old. I had a good job working for an appliance parts distributor. I was engaged to be married. Everything was going great. And then it wasn’t.
I was sitting at my desk, when I had an itch behind my left ear. As I scratched it, I realized that there was a lump at the base of my skull where I was scratching. I saw my family doctor who felt I had a cold, and this was just a swollen lymph node. After a course of medicine, the node went down in size, but then I developed pain which led me to another doctor. And it was this doctor who put me down a path that would change my life forever, that is, once he could convince me, that his hunch was correct. While today I consider myself a good advocate for my health, back in 1988 I was my own worst enemy with as much denial as I threw at not just that doctor, but five more denials with doctors that followed. Six doctors in total, all in agreement, made the recommendation that I get that lymph node, now swollen back to its size when it was discovered, just might be cancer. All of the doctors from general practitioners to sports medicine to an oncologist (I had no idea what that was when I had my appointment), wanted the nodule biopsied, which I finally agreed to.
It was the Monday before Thanksgiving when I had the biopsy done. Bloodwork and x-rays showed nothing to this point, and I felt the doctors were also wrong, and the biopsy would confirm that. And that was the beginning of my disdain for this holiday period around Thanksgiving and Christmas. The biopsy revealed that I had cancer, Hodgkin’s Lymphoma. Definitely nothing to be thankful for.
I go into more details in my book. Today I want to go in a different direction with this post than what I have in years past. Like I said, this year is different for me.
It has been thirty-seven years since I was diagnosed with Hodgkin’s Lymphoma. I remember every conversation, procedure, treatment, side effect, and struggle. I remember every heartache of friends who “disappeared” rather than stay in touch with someone who had cancer. I remember the fights against discrimination and for health care. I remember being treated like I was not going to live even after I was told I was in remission. I remember every detail, vividly. This is what makes it so hard for me each year around this time, I have never forgotten what I have gone through. My story is not unique. So many have their own cancer story, many stories worse than I faced.
But this year is different, and with a purpose. Not considered a milestone or even a rounded number, for some reason, year thirty-seven, I have a different outlook (and I do not know why), and I have a message I want to share for anyone going through cancer, or regardless if in the early stages of remission, or in long term remission. Life is good after cancer.
One thing that a cancer patient is not told by their oncologist, and I really wish would be told, as mental health is just as important to beating cancer as the chemotherapy or radiation therapy, all a cancer patient wants to do is get through treatments, and then get back to their lives, picking up where they left off. The reality is, there is no going back to the life that was. And that is not necessarily a bad thing. Once finished with treatments, a cancer survivor begins their life anew, creating a “new” normal. In fact, I can say, I actually have begun several new normals throughout my survivorship. My point is, my life never returned to what it was and there are times that I miss that past life. But my life what it is now, is what it was meant to be, and as of right now, has been exactly what I wanted. And I definitely want more.
The fact that I have been blessed for four decades to witness the amazing progress in diagnostic and staging processes, and newer theraputics in the treatment of my cancer that everything that I went through, which is now obsolete or at best, rarely done anymore. I underwent brutal and invasive procedures such as the staging laparotomy and lymphangiogram and the bone marrow biopsy just for staging purposes. Oh how I wish we would have had the option of the PET scan back in 1988.
Or how about the option of the port for chemotherapy as opposed to being stabbed repeatedly trying to insert the IV needle into veins being destroyed from the toxic chemicals? I did not have that option. And today I am a nightmare for any tech trying to get blood from me as I have no working surface veins for blood draws or IV placement.
And then, there are the treatments. Even back in my day, the amount of radiation and the toxicity of the chemotherapy, it was believed could actually kill us. This was justified because without treatment, we would die anyway. But now medicine has figured out how to treat more, with less, less radiation and newer methods such as proton versus photon, and the elimination of many chemicals once respected as “the cure” but at the ultimate cost, to a standard regimen now used for decades, a lesser toxicity and providing similar results or better for remission.
So let’s talk about life after cancer, long after cancer since it rarely if ever gets any attention. I have accomplished so much in four decades. As I said, nothing like my life before cancer. I finally found a career. I bought my first house. I travelled all over the country and even travelled to the other side of the world to build my family with the adoption of my two daughters. I wrote a book about my life with and after cancer. I dabbled in local politics running for our local school board. And I had the best dog.
I never liked being referred to as a fighter or warrior. I never asked to be put into this position. I was literally thrown into it challenged to survive or die. I was not brave or courageous to go through all the procedures and treatments. I did what I needed to do just as I do today when I am faced with one of my late side effect issues. Each time something comes up, I have two choices, I can either sit back and let life just happen to me, no matter how bad, or I can make the decision to push back and fight. I am tired. I am exhausted and fatigued. I am in pain. But to quote the late great Tom Petty, “I won’t back down.” I make the decision every day, I want another day. I go to bed each night, not dwelling on the bad stuff, but preparing myself for what I need to do tomorrow. If I do not wake up, I will never know that things were not completed. But if I do wake up, then I have stuff to do.
If you want to know if someone can beat cancer, if you want to see what life can be like after cancer, much to the chagrin of many, I have been as public as I can be, sharing all aspects of my survivorship, hopefully providing the inspiration that it is intended to do. It is my hope, that whether you follow me on my blog here, or on TikTok, YouTube or wherever, if you have my book or have heard me give a speech on cancer survivorship, I hope that if anything really brings it on in, because as this survivorship number gets higher, it really is feeling different for me this year. And I am actually looking forward to this year’s holiday season without any reservation or fear.
Seriously, how could this journey have begun thirty-seven years ago? I don’t even think I look thirty-seven years old…do I?
I write for a variety of resources and opportunities besides here on “Paul’s Heart.” Some make it to publication, and some do not. Regardless, if published or not, as soon as the decision has been made by the entity, I publish my work here on this page. This particular piece I wrote, was for a submission on “blood cancer heroes.” With September being “Blood Cancer Awareness” month, as well as “Hodgkin’s Lymphoma Awareness” month, I decided it was time to recognize a very important hero in the world of blood cancer, in particular, survivors. I try not to be cynical, but as time goes on, it is as hard today as it has been for decades, to give survivorship of cancer, as much of a spotlight, any spotlight, as the battle itself. My essay was on the role of one particular doctor, committed to finding answers and determining care needs for survivors of Hodgkin’s Lymphoma, something medicine really never paid attention to, because cancer survivors are not given anything other than a five year average of survival. If you have followed my page for any length of time, you know that many of us live much longer than that. And we do need help, which is where Dr. Oeffinger comes in. If anyone deserves to be recognized as a “blood cancer hero,” it should be him. The first part of this post will be the article I wrote, as it was submitted. The second part, will be “our” story. Alas, my essay was not chosen for that publication. Nonetheless, his story deserves to be told. So here, as was originally submitted, is…
Dr. Oeffinger – Hero Of The Long Term Blood Cancer Survivors
Dr. Kevin Oeffinger, MD has been involved in survivorship care of Hodgkin’s Lymphoma for over three decades from his beginning at the University of Texas, to his tenure heading Memorial Sloan Kettering Cancer Center’s LTFU (Long Term Follow Up) adult survivorship clinic, to his positions currently held at Duke University; Professor in the Department of Medicine, member of the Duke Cancer Institute, founding director of the DCI Center for Onco-Primary Care, and the DCI Supportive Care and Survivorship Center. Dr. Oeffinger also has membership involvement with ASCO (American Society of Clinical Oncology), the American Cancer Society, and the American Academy of Family Physicians. He is also an editor for the Journal of the National Cancer Institute.
Dr. Oeffinger has published and co-published countless medical journals in regard to late-developing side effects from cancer treatments promoting personalized health care between cancer specialists and primary care physicians. He travels around the nation and the world educating medical professionals on long term follow up care so that the next generation of doctors, nurses, and technicians are prepared for the growing number of survivors living long after their cancer battles have ended.
Then there are his countless patients that Dr. Oeffinger has provided “long term survivorship care” for, including myself for over fifteen years of my 35 years survivorship of Hodgkin’s Lymphoma. I first met Dr. Oeffinger following emergency open heart surgery for a near-fatal “widow maker” level heart blockage, caused by progressive damage from my radiation treatments eighteen years earlier. My regular doctors had no idea what they were working with, nor did I think what was happening was related to my Hodgkin’s Lymphoma. His knowledge and experience of late-developing side effects from treatments provides answers to symptoms other doctors who do not understand what they are looking at, explains to them why, shows them how, and then come up with a survivorship plan to deal with those late side effects.
Dr. Oeffinger once said, “I have received SO MUCH MORE from the Hodgkin’s community than I have given.” I have no idea how many patients that he has cared for, but I have personally met many of them, as there are many of us who have survived Hodgkin’s Lymphoma for decades now, thirty, forty, fifty years, long enough to develop these late effects, I can safely speak for every patient that Dr. Oeffinger has cared for, without his knowledge, care, and advocacy, we would not have endured all the extra years he has given us. His care has given us SO MUCH MORE than we could ever give back to him or our survivor community.
Always humble, kind, caring, and unknown to his patients an emotional toll he is likely carrying himself, I am honored to submit Dr. Oeffinger as a blood cancer hero.
And that, was the essay that I submitted, a small snippet, truly not doing justice what Dr. Oeffinger means to me and so many others. I only touched on a few of his credentials. He is literally world famous with his experience when it comes to Hodgkin’s Lymphoma and survivorship. But it is his care and his empathy, and he instills that same skill into all who learn under him from his nurses to his students to his peers.
In 2008, I set out to find a doctor who would not only understand what had happened to me, and was happening to my body, caused by my Hodgkin’s treatments nearly twenty years earlier. It made no sense to me, as I had been “cured” that whole time. Why would the treatments be doing damage to me? Through a peer-to-peer email list serve I participated in, I found Dr. Oeffinger who was working at Memorial Sloan Kettering Cancer Center in Manhattan. While I had other cancer centers closer in proximity, it was Dr. Oeffinger who was always at the front of our discussions and who I wanted to see.
I remember all of my appointments with Dr. Oeffinger. My first appointment was very telling, the level of care I was about to receive. I had removed my shirt, and he began relating to his nurse, his observations. As I listened to him describe my physical shell, as if he were some sort of human x-ray machine, he pointed out all of the muscle loss from my upper torso, damage from the extreme high dose radiation therapy I had undergone in 1989. He would explain a “pencil neck” and drooping appearance with my neck, and muscle loss in my shoulders that resulted in one shoulder hanging lower than the other. He was already aware of the damage to my heart prior to the appointment, but now he was getting an even clearer picture of what he would deal with. He reviewed the chemotherapy regimen I also underwent back in 1989, and then, with his knowledge and experience, he was able to come up with a surveillance or management plan for me.
Now if you notice something about that last sentence, “surveillance or management,” nothing is said about “cure” or as he put it, “we can’t reverse, stop, or undo what is happening to you, but we can do all that we can to slow the process down.” That was sobering. I know in the beginning, I did not comprehend exactly what that meant. I had just gone through an emergency double bypass because of my radiation therapy. I should have been good. I beat my cancer. I survived my heart surgery. On with my life! Right? Riiiigghhht?
Dr. Oeffinger continued, “in a perfect world, I would be able to order a full-body scan, to see everything that your body is dealing with, but as of now, that is not available.” Over the next couple of years, he would refer me to several, and I do mean several specialists who understand the impact of late side effects from the high dose radiation, and highly toxic chemotherapy that was used to treat my Hodgkin’s Lymphoma. Gastrointestinal, cardiology, pulmonary, cardio vascular, physiatry, psychology, endocrinology, and I am sure that I am missing a few, are all systems of my body impacted from my treatments. My body was now being watched for potential new developing cancers (I currently am at risk for esophogeal and lung cancer), as well as other potential events.
One of those such events, was a middle-of-the-night ambulance ride to the ER, with aspiration pneumonia and highly septic, my cancer history a contributing factor. And right at the beginning of the Covid pandemic, I would have to undergo three urgent surgeries, two more heart (a stent and a valve) and a carotid artery, all having reached a point of needing to be fixed. Treating or repairing a long term survivor exposed to the therapies like I was, is not a simple thing to do, with the procedures coming with their own risks themselves, which is what makes it critical, that I deal with doctors who understand my medical history and “why?”
While Dr. Oeffinger did not do those surgeries, he was there with me for each one. And while I cannot speak for his other patients, I would bet anything, he was there for all of them as well. In 2017, he even made a phone call to check up on me, after my area was smashed by Hurricane Irma. Long story short, Dr. Oeffinger truly cares about his patients.
I was told by another fellow survivor that I had no chance of getting to see him, because he was either too busy, not currently taking any patients, or whatever. To be honest, I have no idea what made that first visit happen with Dr. Oeffinger, but it did happen. He gave me this to look forward to, back then a 42-year old father of two daughters who had no idea what was happening to their Father, “it’s my goal, that we get you to watch your daughters grow, graduate, go to college, get married, and some day, make you a grandfather.” And I never looked back in my survivorship care, only forward to every milestone that I have gotten to witness since. I have had many severe health events pop up, and it was the knowledge he shared, that put me in the right direction to get the proper help, and to see another tomorrow. I am sixty percent of the way toward our goals with another huge milestone coming at the end of the year. And that makes Dr. Oeffinger a hero to me.
Paul's Heart 