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.
This is an actual picture of my current handicap placard. Looks in pretty bad shape, doesn’t it? I have had this one just a little over two and a half years, with a year and a half to go. I have my personal identifications blocked out, but the things that should stand out to you, are the number of cracks this placard has (there is actually another located above the white portion holding the card to my rear view mirror), and the amount of tape I have used to hold this thing together.
Being someone who loves music, I often try to to quote some sort of lyric to connect my posts, but all I can really come up with, is the nursery rhyme, Humpty Dumpty. Now that I think of it, this might actually work.
Humpty Dumpty sat on a wall.
I completed 8 cycles of chemotherapy and 30 treatments of radiation therapy for Hodgkin’s Lymphoma back in 1988-1990. Got to remission, and was living life.
Humpty Dumpty had a great fall.
I was only watched by my oncologist for a possible relapse for five years. At that point, I was considered “cured” or likely free of it coming back, and nothing to worry about. But unbeknownst to my doctors (I was not being followed up anymore), my body was developing late side effects related to both of my treatments. The first of many issues, was discovered in a big way, a “widow maker” heart blockage of one of the main arteries of my heart, appropriately called that, because normally, someone does not survive that condition. Imagine if you will, Humpty Dumpty not only scrambled from his fall, but cooked in the sun on the pavement below.
All the king’s horses and all the king’s men,
An emergency double bypass for that main artery to my heart, the left anterior descending artery, literally saved my life. Comparing my life to Humpty Dumpty’s life, that heart crisis was just one piece of broken “shell” that would be discovered over the years. I have had two additional heart surgeries, I have several other conditions with my heart, a pending lung cancer diagnosis, I have a pre-cancerous condition with my esophagus and my thyroid, my carotid artery has been repaired, and the list goes on and on and on, literally. Take another look at my handicap placard. Then look at my recent photo. Of course, the main difference, you can see the horrible condition of my placard, but not what I am dealing with in regard to my health.
My “shell” looks pretty good (as far as health goes), as good as when Humpty Dumpty when he was still sitting on the wall. So you can guess, when I have to use my handicap placard in certain parking situations, and it is really not often but not without reason, I get stares, glares, and often times some pretty rude comments. My reactions or responses depend on my mood, or physically, how I am feeling at that moment. And if I am not feeling well, I am likely to respond quite negatively. Though I realize my outer appearance, “my shell” does not show my handicaps and disabilities, those unable to mind their own business or those who feel or suffer vigilantitis will bear the full brunt of my frustrations. Sure, “how could they know?” Of course, but it is also none of their business.
I have nearly a dozen doctors involved with my survivorship care from the late effects of my treatments: cardiology, pulmonology, cardiovascular, endocrinology, gastroenterology, physiatry, and many more including a primary care and a coordinator of my late side effects. This “Humpty Dumpty” has quite a few King’s men. If I were to walk around with all of my health issues on the outside, where everyone could see them, I would resemble my handicap placard. And then, you would be able to accept what I deal with. But then you would have to accept the burden that only I carry, the feelings of “that sucks” or “I would hate to have to go through all that” or anything else that may interrupt the good life you may be able to enjoy. So, I give everyone a smile when they see me, if you will, the tape that holds my placard together, you just won’t see the cracks. That keeps you safe, untraumatized.
Couldn’t put Humpty together again.
My doctors cannot stop what is happening. They cannot reverse anything that is happening. But what my doctors are able to do, is deal with each issue as it is discovered and repair what they can. I am enjoying a lot longer than I expected I would when I was told I had Hodgkin’s Lymphoma, cancer, and definitely more time than Humpty got with his four line story.
“But Paul, why not just get a new placard since that one is in such bad shape?” you might be asking. And a reasonable question, a simple question. I wish it was that simple. But just as it is with my body, the best I can do is get a replacement, however it will still have the same expiration date, and inconvenient paperwork still needs to be filled out. I wish my health were as simple as just “replacing” things. Unfortunately, there are so many extra risks associated with any corrective actions than if they were done to normally healthy people. And sometimes those risks are too risky to take.
So yes, I try to take the compliments “you look great!” and such, but it is hard because inside, my body could not feel further from it. If we are spending time with each other, family or friend, I do all that I can to not show you, or let you know, I am not okay. It is not how I want to be remembered. But… next time you see someone taking a handicap parking spot, climbing down from a monster-truck, thinking “that person can’t possibly be handicapped,” first, you have no idea what is under that person’s shell and the most likely legitimate reason they are parking in that space, and second, it’s none of your business. I do not get any satisfaction out of letting anyone know that if and when I get confronted. But if you want to make it your business with me, I will unload everything on you that I carry so that you can know the mess that laid at the bottom of the wall where Humpty landed.
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.
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