Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

From The Beginning, “Over The River…”

Thanksgiving with my Grandmother. I certainly have many memories. For most of my childhood, I lived with my Grandmother and her sister (pictured on the left), and come Thanksgiving Day, that meant the most wonderful smell in the world. Unfortunately, that smell began wafting up to my bedroom early in the morning, as the two of them began to make the holiday meal to feed a total of ten of us. Our kitchen table on sat eight of us, so that meant…

the dreaded “kids” table, usually a fold up card playing table. We had another full dining area, with another dining table, but since there were only two kids, the folding table is where we were put. Regardless of being in a different room for the dinner, I still got my hands on my favorite, the dark meat of the turkey, mashed potatoes, sweet potatoes, stuffing, and something called “stuffing from the bird.” This is when you take some of the already mixed homemade stuffing (it was never boxed), and stuff it into the turkey as it cooks. It was the same stuffing that was being served separately, but cooked inside the carcass, the “bird stuffing” basically is marinated with the flavoring of the turkey, an entirely different stuffing flavor, and SO GOOD! And I cannot forget the homemade pumpkin pie and pumpkin custard.

Eventually I would get promoted to the full table, which by then, was able to squeeze ten around, so perhaps the kid table had nothing to do with the capacity around the main dinner table.

In high school, Thanksgiving would be delayed for us to be able to attend high school football games. The dinner was ready once I got home after the game. I discovered there was a big difference with smelling the dinner being cooked all morning, and walking into the wall of the aroma of the feast to come.

Fives years after my high school graduation, Thanksgiving would never be the same.

In October of 1988, I had an itch on the back of my neck. I had discovered what felt like a huge lump, much larger than what would have been left by a mosquito. I was confused by the mass, as I was a relatively healthy kid growing up. I made a call to the doctor, a general practitioner, who made the diagnosis of a swollen lymph node due possibly to the common cold. He prescribed an anti-inflammatory drug called Naprosyn and recommended I take a break from exercising to give my body some rest it likely needed.

Two weeks went by, and the swollen lymph node did reduce considerably in size. Back to the gym I went. As I am prone to do, I resumed back to the exercise routine I had been doing without easing back into it. The next morning, I believed I had paid for that judgement, as I had developed such a pain in my left armpit, whenever I stretched out my arm. Clearly, I had overdone it.

I had spoken to as co-worker about my new “injury” and how it was likely I was going to miss our city league basketball league game. I mentioned my frustration with having just missed two weeks of the season, and being left-handed and unable to shoot or toss the basketball. He had recommended his physician as being good with sports injuries, so I decided to give him a shot.

I gave him the synopsis of how I got to his office. I noticed a lump. Took a medicine for it. Took a break from exercising. Started exercising. Now my left arm hurts. Simple. Cause and effect, a sports injury.

The doctor examined me and was concerned about the lump more than my arm. The lump had increased in size again. I grew frustrated with the doctor as I was not there to see him about the lump, which had been getting better. I was there because I hurt myself weightlifting. He did some bloodwork, which showed nothing. And I recall throwing in his face, “of course, I know there is nothing wrong with my blood. I have a sports injury.” I would repeat that sentence several more times over coming weeks. The doctor was making a recommendation for me to go see a hematologist/oncologist. Now, if you do not know those terms, do not look them up. I will tell you what they are soon enough. I just asked the doctor, “do they see sports injuries?” and he replied no. But I needed to get that lump looked at.

I stormed out of his office. Two days later I had begun receiving phone calls from that doctor, leaving me voice mails, insisting that I follow through with his recommendation to see the specialist, who was not a sports doctor. I walked over to my co-worker, and asked what this doctor’s deal was, why was he bugging me? He told me, “my doctor is a good guy. If he feels something is of concern, I would trust him.” Looking back at that particular moment, would be a life-changing, life-saving conversation. I made the phone call to that specialist the next day, and made a humble phone call back to my co-worker’s doctor, to inform him that I was following through on his recommendation. Subliminally, I was not doing it because there was something wrong. I was doing it because I wanted to prove to this doctor that I was the one who was right.

It was a rainy, dreary Tuesday, just before Thanksgiving. I pulled in front of the clinic, and there was a sign in the front yard with the doctor’s name that I was going to see, along with the title “Hematology/Oncology.” Still not recognizing the titles, only knowing it had nothing to do with sports, I walked inside, soaking wet from the pouring rain. I was handed at least a half dozen papers to fill out which I thought was a waste of time for a sports injury. Truth be told, having never really been sick, I had never had to fill out all of these forms. As a kid, my mother did it for me.

When I finished, a nurse had taken me back to an office, not an exam room, but an office. Moments later, in walked a man who resembled actor Jeff Goldblum, The Fly version, not Jurassic Park version.

The doctor sat down at his desk, took a glance through my folder. There was no way I was prepared for next. “Hodgkin’s Disease is a very curable form of cancer, especially when it is caught early.” I felt like the cartoon characters when they are caught shocked or in disbelief.

I honestly do not remember another word he said from that point on. I know that I argued that I cannot possibly have cancer. I had a sports injury. He had not even examined me. Who the Hell did he think he was? I have never considered myself an angry or violent person, but for the first time in my life, I felt pure rage. I could not have gotten any further away from what I felt was wrong. I do remember ending up in an exam room eventually, but not a single word of what was said. Literally, I likely only heard “blah blah blah blah blah” from that point on.

A few days later, I had begun receiving calls from the prior doctor, urging me to go forward with additional bloodwork and a biopsy. Biopsy? I do not remember that discussion, but as I said, I tuned everything out the minute the other doctor began talking about cancer.

I went through that Thanksgiving weekend in 1988, with my mind in turmoil and denial. But two more “2nd opinions” later, I had finally been convinced that I needed to undergo the biopsy, if for nothing more than to prove I was right and every doctor I had seen was wrong. Spoiler alert… I was wrong.

Every Thanksgiving after that, this memory gets triggered, the exact scenario playing over and over on an endless loop. I am not able to stop it, or as some have suggested to simply “get over it.” The next Thanksgiving, 1989, I was undergoing chemo for a relapse of my Hodgkin’s, and for the first half of the 1990’s, all I could think around Thanksgiving, “is this the year it is going to come back?”

Simultaneously, as I struggled with my survivorship, the dynamics of our family traditional Thanksgiving dinner began to change. Talk had begun about the bond that at least held us together on this day, my Grandmother. We soon began to realize that without her, we would likely no longer gather together. And in 1998, my Grandmother passed away from her 2nd battle with cancer, this time, ovarian cancer. And just like that, we no longer spent any holidays together with each other.

In the beginning of the 2000’s, if there would have been any hope of me finally getting a grip back on the holidays, it was going to be with the arrival of my daughters. But by then, I had developed a mindset as an employee and provider, that I worked every holiday offered by my employer. That in spite of having two young impressionable children who of course would have loved to spend time with me, it was felt that it was more important for me to bring home the extra cash for the family. We could spend time with each other after I got home.

And there you have it, why holidays mean nothing to me, especially around this time of year. Because even though I consider myself blessed in over 32 years of survivorship, I still carry the trauma of what happened 34 years ago.

Hands Up. I Can’t.

If you have ever flown, you are familiar with going through full body scanners. There are plenty of jokes made about what can be seen as you go through the scanner, but nothing that lets you see “intimate” body images. That being said, a “shape” does appear on the “human shape” ( a picture of a body, not my own), on the screen in the area of the middle of my chest. That shape is my artificial heart valve, which does contain metal. I also have a stent with my heart, and also my carotid artery. And I have plenty of metal clips in my chest cavity. Long story short, I am going to get extra attention when I exit the scanner. I have a card in my wallet that makes reference to the “hardware” inside my body, necessary to keep me alive, but I will still usually require a passing of the metal detector wand, and hand swab. Whatever, I am not worried.

The problem I do have with the process, is that I cannot raise my hands above my head and shoulders, as high as TSA would like me to. I can extend my arms outward which would give them a similar view as far as I am concerned. But going higher, is not possible. Related to my treatments for Hodgkin’s Lymphoma back in 1988, I received a large amount of radiation therapy. The damage that has developed progressively over the decades is diagnosed as “radiation fibrosis syndrome.”

Dr. Michael Stubblefield is a pioneer in the study of this condition, and one of my former physicians who I actually saw for this condition. The key word to focus on, is “sclerosis”. Typically you would hear this in reference to the cardiac system, as in a hardening of the arteries or valves. Well, if you apply that the the muscles in your body, it is the same thing, a hardening of the muscle fibers. This issue will also result in muscle loss and atrophy, something you are not likely to notice necessarily when it comes to the upper body, unless someone has their shirt off. Then you can clearly notice the damage without even having a medical degree.

In another one of Dr. Stubblefield’s slides, and to be clear, none of these images are me, I can tell you, that without my shirt on, my physique is very much like the image on the right. In the other two images, you can also see a “chicken wing” like appearance with the shoulders that I also have, preventing me from having two well rounded shoulders, just flat shoulder blades. With my shirt on, look at me from behind, you might be able to notice one of my shoulders actually does hang lower than the other shoulder. There is also a condition many of us have to deal with, and I currently have mine under fair control, is something referred to as “drooping head syndrome,” appropriately named because it looks exactly like it is called. This is caused by muscle loss in the neck, as the image in the right photo demonstrates. Many of us have heard fellow survivors referred to as “pencil necks” depending on the severity of muscle loss in the neck.

Getting back to airport security, this radiation fibrosis, hardening of my shoulder muscles that are left, prevent me from raising my arms above my shoulders. More times than not, after I get out one of the quickest medical explanations, “I can’t, I have radiation damage from cancer treatments,” most will let me go through as is. Every now and then, there will be someone in TSA who will have an attitude, and make me go through the old metal detector instead. I do not let it bother me, because while some very cool images will show up on my picture, someone else going through might have something nefarious hidden on their person that needs to be caught.

Forcing my arms, as in someone lifting them for me, would tear my shoulders apart. In fact, my doctor was so concerned with injury to my shoulders, that he even advised me against participating in karate with my daughters, even if slow and low impact, modified for my protection, for fear of injuring either or both of my shoulders. As you can tell, I felt I needed to prove my doctor wrong, although admittedly, I did stop following my first belt promotion, a matter of just being able to say that “I did it.”

At work, some of my job descriptions involved reaching above my shoulders, and repetitive motions with my arms. As my condition got worse, it required my doctors to issue health restrictions, which under the Americans With Disabilities Act, required my employer to not only accept those restrictions, but retain my employment, finding other work to complete within those restrictions. Seriously, the ADA exists for peoples’ protection. Learn the law.

Over the decades, I have slowly lost my ability to make my upper body work for me. I cannot do pushups or pullups. I cannot reach for some things in my cabinets without a step stool. Nearly every sport I used to enjoy, volleyball, softball, bowling, are done, my arms unable to perform the functions necessary to participate. The last thing I remember being able to do, and this was more than fifteen years ago, was hoisting my daughters above my head, to carry them on my shoulders.

If there is anything, anything that I truly miss having lost this mobility, it has been to be able to hold my daughters this way ever again (yes, I know they are both much older now, but someday I hope to be a grandfather, and this old perch will never be sat upon like that again.).

Looks can be deceiving. You know what I mean. This shell that we have, hides what is being dealt with inside. Do you know the story of anyone using a handicap spot in a parking lot? What happens when the person looks totally normal, or climbs out of a vehicle that no one with any kind of handicap should be able to do? There are a lot of internal things that you cannot see, functional things as simple as someone struggling for air, due to heart disease or reduced lung capacity. Perhaps as is often the case, some do not want to burden others with a load of pity or empathy for those of us that have limits. People are much happier, and comfortable, when they do not have to think of some of the difficult things that we deal with. That does not change the fact that we still do have to deal with those things.

Difficult Is An Understatement

If there is one thing in my life that I am difficult about, it is about my diet. In fact, I can be as stubborn as a mule when it comes to what I will eat and what I will not eat. Let’s get the obvious out of the way. My issue is not that I do not recognize the importance of eating a good diet of balanced nutrients, low cholesterol and salt, low fat, blah blah blah. Sorry, there goes that stubbornness showing up. I really do understand how important it is to eat properly. I just do not. I won’t say that I “can’t.” I clearly know, that I will not. And it is not for lack of trying, and I have tried many diets, other suggestions, a dietician, and even being shamed and guilted has had no impact.

The need is obvious. I am overweight. My high school weight was 128 pounds. At the time of my diagnosis of Hodgkin’s Lymphoma, I weighed 150 pounds. If I really put my mind to it, I am pretty sure this weight gain could be attributed to a party life-style that had been brought to a screeching halt with the diagnosis. But then something strange happened.

Eight months of chemotherapy, and the damaging of my thyroid from radiation therapy, I gained over fifty pounds for the first time in my life, topping the 200 pound mark. I was always under the impression that chemo patients lost weight, a lot of weight resulting in a sick, waif-like thin condition. But one of the drugs of my chemo cocktail was high dose prednisone, a steroid, which one of the side effects is increased hunger. I ate a lot during my chemo, and not necessarily quality, but rather what tasted good; lots of pasta and ice cream.

Topping out at 206 pounds, I was intent on losing every pound I gained during chemo. I joined a gym. I changed my diet, well sort of. Now would be as good a time to qualify or explain my eating habits.

This, is Morris The Cat. He is known for his television commercials in the 80’s and 90’s for being one finicky feline. Well, when it comes to being finicky, Morris has nothing on me. And unlike Morris, I have had this issue much longer than he has. I am best described as a lifetime “meat and potatoes guy.” There are only two vegetables I will eat voluntarily, and three maybe four fruits I will eat. It is not a case of “well have you tried it?” I have tried most things that I do not eat, and it is either the flavor or the texture that will actually repulse me to the point of nausea. Now, back to my post.

I wanted to drop the weight I gained from my chemo quickly. That meant changing what I ate, and exercise. I joined a gym, spent roughly an hour a day there. And because of my finicky eating habits, I literally ate, and had no issue doing so, tuna mixed with Italian salad dressing on a pita for lunch, with baked beans (yes, I was fun to be trapped in the office with), and a large baked potato for dinner. In two and half months, I lost every pound I had gained. Success. One problem. As I returned to my normal eating, which I coincidentally stopped working out at the same time, the weight slowly started creeping up on me.

Now it should be noted, I take levothyroxin, a synthetic drug to make up for how my thyroid, which controls metabolism, fails to do. I was put on the drug to help me with my weight, while at the same time, I had been told, “don’t expect to lose weight.” I did expect to lose weight, because I had been paying attention, but alas, I did not lose anything, just continued to gain. Eventually, another drug was added to my list of nine, as I became diagnosed with diabetes. I was put on another drug, that potential could help with my weight, but still, nothing has happened.

I have been where I have been at now, for nearly twenty years. I have done all kinds of diets, with only Weight Watchers having the best success, as long as I had peer support, which I did not, or at least did not keep up. I am not an alcohol drinker, so that is not a problem, but one vice that I do have, unable to stop, is Coca-Cola. I stop multiple times, only to start back up again. It should be noted, I do not lose weight when I stop drinking Coke. Admittedly, I use the Coke for energy, unable to do energy drinks due to my thyroid medication, and I do not drink coffee. But I need caffeine, and Mountain Dew is too rough for me.

Portion control is not a problem for me. I do not eat a lot of high cholesterol or salty foods. I walk about 10,000 to 15,000 steps a day, and following my last heart surgery, I am finally able to do some upper body workouts to at least have a minimal cardiac benefit. So there is really no reason for me to be carrying the weight that I do. It is right there, above my waste line. It cannot be missed.

I have so many well-meaning friends who try so hard to help me with my diet issue. I am a good sport, trying anything placed in front of me, but as one found out with my “repulsive” comment about their plate, this mentality of what I will eat and will not, is so deeply engrained. I understand why it is so hard to quit smoking when you have been doing it for so long. I have been eating this way, 52 of my 56 years of life.

The last post, I mentioned comedian Gabriel Iglesias (Big Fluffy) and will refer to him again. Iglesias had mentioned that while during Covid, he had lost nearly a hundred pounds. Which he credited to going “vegan,” which sparked laughter at such disbelief. But he stood by his claim, and then proceeded why he failed lasting less than a year on the diet, that it was just too hard for him to make that change after so many years. I get it Big Fluffly, I really do.

Like I said, it is really hard for me to understand why I am unable to do anything about my weight. I do exercise. I eat with portion control. And I pretty much eat the way that I did when I weighed what I did in high school. But there has been some major changes to my body. And since these theories of mine have not been ruled out, I am pretty much leaning in that direction until proven wrong. And if so, would explain why nothing has happened to experience dramatic weight loss, but unlikely ever to drop the pounds.

My treatments thirty plus years ago did major damage to my metabolism, likely completely destroying it. So no, I do not believe it can be kick started. Also, with the surgery done to my abdomen as part of the staging process to my Hodgkin’s Lymphoma, I likely have a ton of scar tissue now, which I cannot prove weighs extra. Here is why I believe in that theory, because no matter how much exercising I do with my abdomen, there has never been any shaping or even a hint of a “six-pack” ab. Everything else about me is no different than in 1983, five years before I had cancer.

There, I have made every excuse I have, every reason I can justify. I realize that to change, I need to want to change. I do feel I need to lose the weight. But will not do it at the expense of enjoying what little food I find enjoyable. I guess I would have to admit, there is a part of me that feels, with all the health issues I deal with, which are progressive in nature, will still occur regardless of my diet, so if I am going to be able to at least enjoy something, my diet is not going to change my fate.

To all my friends, family, and readers who make the right choices in diet, I admire you. I really do. I have so many friends who are plant based, yet I cannot imagine going one day without meat. I am glad you feel better eating that way. It is just after all the ways that I have tried, even my subconscious is just as stubborn as me.

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