Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “October, 2022”

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.

If It Ain’t Broke…

The expression goes, “if it ain’t broke, don’t fix it.” A couple of days ago, I received my 5th dose of Pfizer vaccine, this particular booster, the bivalent booster, now in place of the prior vaccine, considered the monovalent booster, no longer authorized as a booster dose. Here is the difference between the two vaccines. The older vaccine covered up to the Delta variant, not the Omicron, which the newer vaccine protects against and hopefully most of its variants.

Under the guidance, direction, and supervision of my doctors, and the Leukemia & Lymphoma Society, I followed the simple protocol of timed doses, as well as the appropriate bloodwork, prior to each dose, and after each dose, well, at least up until now.

It has been well established that my body does not maintain the vaccine protection, similar to other vaccines I struggle with keeping coverage. Of course, my first question to the pharmacist, “so when will I need to get another booster, especially since I know I will likely only have four months or so until I have no coverage anymore against Covid?” Her answer was that they were still trying to determine that. So, what can I do, if medicine cannot help me?

Simple, keep doing what I have been doing. Because as of this post, I have still not been infected with Covid. And no, I have not been hiding, “living in fear” as many like to call it. While some may have looked at any suggestions of precautions as political or conspiratorial (the loss of freedom and tyranny), I chose to look at it, “what can it hurt?” Even if opinions and suggestions changed with something we had never dealt with, which is how science works, like washing hands, something we should have been doing in the first place. Have you noticed how we no longer have a shortage of hand soap and sanitizer? Why is that? Perhaps it is not being done as efficiently or as often, just as before the pandemic. Of course there was staying home if you were sick, or avoiding people who were sick. And the mask… ooooooh that damn mask! At least in my case, and in the case of three others I know, none of whom have had Covid, the mask has provided that protection.

In his most recent comedy special, comedian Gabriel Iglesias (known to his fans as “Big Fluffy”), spoke of his experience with Covid, having four of the five extra risk factors. When he spoke of the masks, he mentioned that most of the complaints that he had heard, pertained to the “smell,” which launched Iglesias into a funny and truth-hurts bit. “Of course the mask smells. We have been trying to tell you that for years! You are just now breathing what we have been breathing in (referring to bad breath).” He then went on to joke that his masks smell like burritos and churizzos.

I am now one of the minority, probably way less than 1% who still wear a mask, 100% of the time indoors, and outdoors if the area is too densely populated. And now, we head into the colder months, everyone goes indoors, and northerners travel south, bringing their germs and sicknesses with them. So yes, just as 2020 and 2021, you have to expect another Covid surge.

Nothing pissed me off more, than being told I was “living in fear,” just because I followed recommendations to do my best to prevent infection. On top of my vulnerabilities and risks that I have in the first place, I had to have two major surgeries in 2021, one for a carotid artery (important to prevent a stroke), and the other, my 3rd heart surgery, as my breathing had become impacted that I could not go more than ten feet without struggling for air. A Covid diagnosis would have delayed either surgery, regardless of the complications to my cardiac system from Covid itself. In 2022, I wanted to see my daughter graduate, again, a Covid diagnosis would have prevented me from attending an event that meant as much to me as it did to her.

No, I was not living in fear. I was doing all that I could to prevent a tragic event, or an absence to one of the biggest days in the lives of my daughter and I. And here is my point, as I said, with an attitude of “what can it hurt?,” clearly, nothing. The steps I took, while doing things I wanted to do, just with precautions, got me to where I am today. My method, at least in my situation, worked.

Two days ago, I participated in a Zoom session with a panel created by the Leukemia & Lymphoma Society. The panel had two doctors from Memorial Sloan Kettering, a doctor from the NIH, and of course the doctor heading up the study for the LLS, on Covid and how it affects those of us who have had blood cancers, which actually was considered by the CDC for its valuable information collected. While this meeting did pertain to those who have dealt with leukemias and lymphomas, some of the information that was given, is actually good information for all to pay attention to. I value the doctors that participated in this panel, as well as those that I personally interact with, and all are on the same page. This information is not coming from and television media or social media. The information is coming directly from the medical experts themselves.

Is it okay to go back to normal? Just as cancer survivors ask this same question, there is no normal, only a new normal. Can you go without wearing masks, hang out indoors in packed theaters and restaurants, etc.? Their unified answer was, sort of. The reminder came that the virus is still around, with newer variants (as many as 300 of them). It is up to each individual, and their own risks. But they also said, the colder months are when people have a higher tendency to get sick, and spend more time indoors. Add to that fact, this season, is probably the first time in two years, with a decline in flue and other illnesses, along with Covid, and most no longer wearing masks, there undoubtedly will be a three year spike. So, let your guard down? No. Live life, yes, but be smart and careful.

Can you get cancer from Covid or the vaccine? This question possibly came from all of the conspiracies floating around. Once again, the panel was in agreement, that it is highly unlikely, stopping just short of 100% certain, you cannot get cancer from Covid or the vaccine. The reasoning? If you have cancer diagnosed following either infection or vaccination for Covid, you had the cancer before either. Cancer will not just pop up like that. That said, there was the possibility that a weekend immune system from the infection, could allow a cancer to progress or develop more quickly.

Evushield is not a substitute for the vaccine. The doctors on the panel really appeared disheartened that they had to admit having patients who were still not vaccinated, that after two and a half years, people still were avoiding an initial dose, or boosters. Again, unified, the risk of dying from a severe infection of Covid for anyone having co-morbidities and not being vaccinated, has not changed to the benefits and the risks of rare side effects from the vaccination. Now that said, I have friends and fellow survivors who “cannot” get the vaccine, which is different than those who “will not” as was the case of my younger sister who died from Covid last year.

Paxlovid is a great treatment for early diagnosis of Covid. End of story.

Who is likely to have to deal with long haul syndrome? According to the panel, 50% of those dealing with long haul are unvaccinated. Symptoms of long haul likely to appear after four weeks and can include “brain fog”, cardiac, and pulmonary issues. If vaccinated, and having a shorter bout of Covid, you are less likely to have to deal with long haul syndrome.

Should spouses/significant others, family members, friends of someone who has higher risks with Covid, act as if they themselves were high risk also? Short answer, yes. And that was agreed by the entire panel. And here is why, politics, conspiracies, and false information thrown out the window. This falls on a simple premise, if you truly care about your loved one or friend, you do not want to be the one who brings and infects your loved one or friend. This is also known as care and consideration, nothing else, no other motivation or statement. Any sacrifice is not for you, it is for your friend or loved one. Need proof? Someone brought Covid into my sister’s house, as everyone in the house ended up with Covid (and yes, no one was vaccinated). And the shitty thing about that, our mother was put in the middle, of being there for her dying daughter with Covid, or exposing me to Covid just prior to my heart surgery. I truly believe a simple mask, combined with the vaccine would have prevented this tragedy for my mother.

Rapid test or PCR? The entire panel agreed, while the rapid test has its value, the more accurate will always be the PCR test for its accuracy, especially important in determining if still infected before exposing anyone else.

What good are antibody tests now? As of this posting, not very. Because the antibody testing covers up to the Delta variant, not the Omicron.

Why doesn’t the vaccine prevent infection? The vaccine was NEVER meant to prevent infection or spread. That is what most either do not understand or forget. If you do not get infected after being vaccinated, that is a benefit. The vaccine’s known purpose was to lessen the severity of the infection, that could often lead to death. I know more than a dozen people who died from Covid, all unvaccinated. Everyone else I know who has had Covid and vaccinated, are still here (side note – my sister’s husband and sons, unvaccinated, did survive their infections, but one is struggling with extreme long haul).

But why do we have to keep getting boosted and for how long? The one doctor from Sloan Kettering stated the misconception, that the vaccine is not working or not good enough. “It is not the vaccine, it is the virus constantly changing, like the flu.” There is a reason those of us who got one polio vaccine, only have one in our history. Because the polio virus never mutated. Unlike the flu, and now, Covid. The vaccines work, it is the viruses and their constant mutations, that will likely require a regularly scheduled shot for Covid, just as we do for the flu. With the newer bivalent, a timetable for boosters has not been set yet, but possible six month or annual boosters. A vaccine to prevent something is only going to happen before a virus gets to an epidemic or pandemic level. Something our country had no desire to prevent back in the beginning.

Again, this information did not come from television or social media. Drs. Mini Kamboj and Ariela Noy, both from Memorial Sloan Kettering, Dr. Adrian Weistman of the NIH, and Dr. Larry Saltzman of the LLS, are all highly reputable resources.

For those that cannot receive vaccines, again, that is different from those that flat our refuse, there are likely alternatives out there, if you are fortunate to find a reliable resource, and I am sure they are out there. I am not personally able to commit to this as an alternate option, but my mind is open to anything that would be deemed complimentary which means, at least getting the advice of your personal physician.

I hope this information is helpful. It has worked for me so far.

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