Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Food”

This “Left” Seems Right

Many times, I will get the subject of my posts from questions asked or comments made by fellow long term survivors. This will be one post, that not only benefits long term survivors of cancer, but those who have been fortunate to never have seen the inside of an oncologist’s office.

This is a very popular meme image that circulates around the internet. And since it fits in with my topic today, I thought I would make my own meme with the picture.

I am sure you have heard of the condition “reflux,” commonly referred to as G.E.R.D. (gastroesophageal reflux disease). It is the body’s reaction, a very acidic reaction brought on and aggravated by diet and stress. It is a fairly common condition, and its severity depends on the individual. Not sure if you have ever had to deal with it?

Comedian Rich Hall, gave a very clear and vivid description of reflux, using a term referred to as a “sniglet” decades ago on HBO during one of his comedic segments. A “sniglet” was simply a made up word, describing something that there was no other word for. In the situation of my post, he referred to a “vurp.” Care to take a guess at what “vurp” represented? It describes what happens with reflux perfectly, the combination of “vomit” and “burp” at the same time. If you have ever experienced this event, then you have had reflux at least once in your life. It is not pleasant, and the acidic aftertaste left in the mouth is just awful.

But there are those who must deal with this regularly. And its level of severity is determined by many conditions such as diet, stress, and other health conditions. Treatments can range from eating a diet with less acid (no tomato or orange products), or not eating fried or spicy foods, to daily routines such as not eating by a certain time of the day prior to going to bed or sleeping in a certain position, to using over the counter medications such as TUMS or stronger prescribed medicines.

A single event of reflux may not be such a big deal. However, if it is a situation that is repeated time and time again, it can be something quite serious. As I described above, if you are burping, and instead a small amount of vomit comes up instead of air, this is very acidic. We all had science in school, and know what acid does, eats away at things. Well, the more acid you have to deal with, the worse it will get. And for our bodies, in particular our esophagus, our throat, our mouth, and our teeth, this is a very bad situation. Because of the issues I deal with from my treatments for Hodgkin’s Lymphoma, this situation also almost killed me.

When most deal with reflux, it is often following a meal. We have an opportunity to do something about it, pop a TUMS or some other medication. Assuming we have not eaten just before going to bed, we are likely to stay vertical for a number of hours, allowing gravity to do what it needs to, to keep the stomach acid from creeping up into our mouths. If lucky, just a burp occurs or perhaps, a little bit of “vurp.”

If it advances to its worst timing, at night, while in bed, many problems can occur. Sure, your quality of sleep will be affected as you toss and turn, trying to get the GERD to stop. In my situation, I have two issues that I have to struggle with. Because of damage done to my esophagus from radiation therapy, I have a condition that not only traps food and particles in my esophagus, but also this stomach acid. This twice has led me to the emergency room with something called aspiration pneumonia, the trapped product bacteria gets breathed in to my lungs. My first episode of this, I went full septic, nearly dying. The other issue, is that I can actually “choke” myself out in my sleep as the acidic content fills my throat area. The problem is, I sleep through this event when it happens. So unless someone is around to hear me gasping, or my breathing gets interrupted that it startles me out of my sleep, the episode will not end well. Once I am woken up, it will be hours before I can fall back to sleep, and get the symptoms of the reflux event under control.

So, what can be done to help with this condition? Believe it or not, pretty much! As I mentioned, diet plays a major role. In spite of me being a picky eater, a condition that has me desiring the very acidic products that would aggravate the situation (tomato sauce, orange juice, buffalo wings, etc.), over the years, I have learned to do without these things. This does not mean that I no longer eat them, but it better well be damn worth it if I am going to pay the GERD price. And I do imbibe occasionally, and almost always will pay the price.

Stress, reduce and/or eliminate it. I do not need to go into detail. You know what this means.

Medications can help from over the counter TUMS and Pepcid to prescription level such as I have to take. Unfortunately, I am at a point where I take both, definitely not good to do, and certainly not as long as I have been taking them, nearly fifteen years now. But without taking them, this is not hyperbole, my quality of life is gone.

Timing, as I mentioned earlier, do not eat if you are going to be going to bed soon after. It is best to wait to go horizontal at least two to three hours, allowing for your food to travel where it needs to go, without coming back up.

And the final thing that can help with “vurping,” positioning. To prevent an attack coming on in my sleep, I have actually had to adjust the level of my bed, by about two inches, the headboard end of the bed only, so that my bed is in a downward slant, which allows for gravity to do what it must, to keep the acid where it belongs. All this takes is a simple piece of wood under each foot of the bed at the headboard. But, of course in my situation, this is not enough for me, and that is where the meme above comes in. This is also not the first time, the position that I sleep in, dictates my comfort level.

Back when I had my first heart surgery, done open heart through the breast bone, I was forced to lay on my back, just from the discomfort from the destruction of my chest and rib cage, not a position I normally sleep in. My favorite position has always been on my stomach. In the hospital, my bed was elevated, so being on my back did not bother me. Once at home, sleeping on my back did not work at all. And so, I began to lean to my left so as to change my position enough to get comfortable. A pillow would be placed behind me to hold me in that position. Seemed simple enough, just enough lean, not to be flat on my back.

Then terror struck. No, I had done nothing to my incision or rib cage. I felt as if I was on the verge of a heart attack, as if my heart were going to explode. The beat of my heart was pounding against my rib cage. I began to panic. I removed the pillow from behind me, allowing me to return, flat on my back. Odd, the pounding stopped. I really cannot explain why I did what came next, but I leaned to my left again. Again, that pounding had returned, and I leaned back flat again. Ok. This was weird. But at least I no longer thought I was having a heart attack. Now I was curious. I decided to lean now to my right. This time however, there was no pounding. I would return to my back, and once again, turn to my left. Sure enough, the pounding resumed. Flat, nothing. To my right, nothing. So I was not going to make an emergency phone call or a trip to the emergency room, but clearly someone forgot to fill me in on a very important detail. What the Hell was done to me, that my heart “shifts” when I go to lay only on my left side, that it feels as if it is touching my rib cage, making me feel as if I am sleeping on a bass drum?

An article on “” explained that the apex of the heart being closer to the wall, when sleeping on the right side, the mediastinum (a thin lining), holds the heart in place separated from the lungs. Sleeping on the left side, the heart will shift slightly. Combined with my surgery, and things likely moved around internally, this is exactly what was happening. Though it has been studied, the website did not cite the study, but expressed that according to ECG (electro cardiogram) readings, there was a noticeable change in the heartbeat, when laying on the left side, and none, when laying on the right side. There is nothing reported if side sleeping is dangerous or not, nor does it contribute to any kind of heart ailment. For the purpose of this post, that is where I am ending this part of the left side sleeping discussion.

With reflux impacting my sleeping position, I found another discovery about me sleeping on what has become my dominant position now (with me ignoring the pounding heart beat). In spite of the prescription I take, watching what I eat and when, and position of the bed, all too often, that has not been enough for me to get through a night without either choking myself out from the rush of stomach acid, or worse, as mentioned above, developing aspiration pneumonia. I have found, sleeping on my left side, I do not have episodes of reflux. When I begin my night trying to sleep on either my right side, or even attempting my stomach, flat on my back has never been a consideration, my reflux fires up, and sleep is impossible. The problem for me occurs, if I successfully fall asleep on my left side, and if I fall deep enough, I have a tendency to roll flat on to my back, and then, you guessed it, my reflux acts up. This becomes a major issue, because I do not always wake up when this happens, hence, not until I am basically choking on my vomit, I normally wake myself up. If I am lucky, someone hears the gurgle and gasping for air before it gets worse. Once awake, I end up, getting up from the bed, going into the living room, and sitting in a chair for the next few hours, trying to get my chest and throat to settle down.

So of course, I am curious about the “left side thing” in regard to my reflux. According to a the NIH actually confirms the difference between sleeping on the left side versus the right side( ). One hypothesis holds that right-side sleeping relaxes the lower esophageal sphincter, between the stomach and the esophagus. Another holds that left-side sleeping keeps the junction between stomach and esophagus above the level of gastric acid ( ).

There you have it, something from a long term cancer survivor that can actually benefit someone who has never had cancer, but has the nasty torture of reflux and lack of sleep. So yes, if I am laying on my left side, this is exactly what I am thinking about as I go to sleep.

The Days After

The first few days following a major hurricane can be described in any number of ways, likely depending on how much the devastation has affected a person individually. Shock and sadness are a given as the loss sets in that our once daily lives in paradise are changed forever, perhaps, irreparably. It is easy to feel overwhelmed at the amount of clean up and repair in the days ahead, not even knowing where to start. And when our mind stops whirling like a cyclone from all that must be done, either common sense or survivalist tendencies kick in. It is this behavior that can either help, or make things worse.

There are two main things that those in the path of a hurricane, or the devastation of a hurricane, will need, gasoline and bottled water. The demand for both is an immediate switch that gets flipped, with the first words uttered by a weather forecaster, before suppliers have a chance to prepare. Artificial shortages are created, leading to panic of the possibility of not having what is needed. Someone with a calm demeanor can rationalize, that if we just purchase our goods at our normal rate, we should be able to get by until increased supplies arrive. Instead, supplies are empty of both within hours, and from there, supplies of both are not able to be kept up with. As the storm passes, all anyone knows is that there is no gas and no water. Lines form for hours at any gas station able to operate, and grocery stores, ration out water supplies as they become available. Then come the days after.

There are several behaviors that come forward in a time like this. First and most obvious, the curiosity of the devastation. As soon as you step outside of where you rode the storm out, you can see the immediate impact. But without power, cable, and wifi, we want to know just how bad it really got. This actually ends up being a bad decision for several reasons. One, with downed lines and trees, these dangers, especially if submerged in water, can be deadly. Second, “looky-loos” as they are called, often get in the way of rescue efforts, in worst cases, needing being rescued themselves. And of course, there is the unnecessary waste of gas just “riding around.”

Which of course, leads to the next issue, finding gas, or even an operating gas station. Relying on the “gas buddy” app could be misleading with people putting in false information. But the first thing you had to do was to find if a station was working, which if you saw a nearby traffic signal working, was an encouraging sign. Likewise, there would be a lengthy line of cars, many there for seven to ten hours, having hopes of being lucky to buy gas. It is inevitable that throughout this process, there would be at least one jackass somewhere, cutting into the line, causing authorities to respond as tempers flare.

Grocery stores, would open as soon as they could, if able to, usually with the help of a generator. But as good as sign as this was, anything in the store that was refrigerated would be tossed and unsellable. You would be able to buy bottled water as long as supplies lasted. I can tell you that as of today, four days after Ian, all shelves locally are still completely empty of fruit, vegetable, and dairy products. But as supplies come in, they will be gobbled up and hoarded by those afraid it may be too long before they get a chance to buy more. So this supply will remain near zero.

Traffic is a major safety concern, as many intersections no longer having operating traffic signals, with a six lane road intersection. It is a “courtesy” situation, everyone is expected to stop at each light that is not working. Six lanes of north and south traffic intersecting with six lanes of east and west traffic, all trusting each other to be courteous and take turns, until someone just says “fuck it” and ignores the unwritten respect. Then it becomes a free-for-all and then humans are placed in the intersection to direct traffic. This is another reason authorities do not want unnecessary vehicles on the road. But you know society, “I have a right to be on the road.”

There are several local businesses who may have been able to survive with little damage, enough to still be able to be open. Many will work to serve food to first responders and emergency workers. Others will try to prepare foods for locals, unable to cook or even have a place to stay. Unfortunately, there will be those who look at the open sanctuaries as an opportunity for “life as usual – ‘I’m out for a nice dinner” and end up being demeaning and disrespectful because the restaurant may not be able to offer a full meal, service may be slow, because workers still have their own mess to deal with damage wise back at home.

Finally, this is a heavy tourist area. And once the fall rolls around, along with hurricanes, so come all the vacationers, snowbirds, and seasonal homeowners. Things are bad enough for us as locals with the devastation and shortages, but curious or entitled travelers will soon arrive, compounding our problem. On social media pages, you can already see locals emploring everyone to stay away, at least for the the time being. If you need to come down, to check out property, and it must be done personally, fine. Plus, with groceries already at a minimum, gas in short supply, we do not need the thousands and thousands of visitors right at this moment compounding our needs. But the reality is most will come down to pick up their seasonal traditions of eating at coastline restaurants, boating excursions, and many more activities that make this such a great place to live.

But as I experienced with Irma five years ago, and the great everglade brush fire two years later, those here for recreation are not shy expressing their displeasure with having their fun times interrupted by inconvenience, expecting everything to be normal before they arrive. But the truth is, it will be a long time before anything is considered normal. And if that is how they want to spend this season, and they know this upfront, then fine. They have no right to complain how slow recovery is going, or how short supply things are, especially if they are adding to the problem.

Like I said, you can either stay out of the way, help, or add to the dilemma. It does not take long to see who is who.

32 Years…A Timeline Of Survivorship

Today I recognize yet another anniversary of the day I finished my chemotherapy for Hodgkin’s Lymphoma, now 32 years ago. Among my circle of fellow survivors, many of us recognize this date, while others choose to go with the date that they were diagnosed. Going with the diagnosis date as the anniversary date, is supported by a popular concept recognized by many organizations, that just being diagnosed with cancer, makes you a survivor. For me, I use my last day of treatment. Technically, March 2nd was the last injection I received, but I still had one oral drug I was taking until March 3rd.

As I am still following precautions for Covid19, tonight is going to be just as it has been the last two years, just a quiet night, likely a lot of reflecting. As I have mentioned many times before, thirty-one times before in fact, this anniversary is bittersweet to me, because of all the other survivors not just that I have known, but also never had the chance to meet, who either did not survive their battle with Hodgkin’s, or lost their battle with their late developing side effects, similar to what I deal with.

While it is no small fete to continue to survive cancer, now into my fourth decade, the health issues from the treatments that were used to save my life, are a major struggle for me as they continue to add up. This is now the 3rd anniversary that has followed yet another major surgery. I have had three major surgeries in the last three years, two of those surgeries last year. Two of the surgeries involved my heart, the other, a carotid artery.

Looking back, over the decades, in spite of what I have gone through, I would not change my mind in the decision to accept the treatments that saved my life. The alternative was a certain death from one of the most curable forms of cancer.

May 20th, 1990, just over two months of completing chemo, I got married (for the first time). Seven years later, I began a career that not only fulfilled me, but would provide me with one of the most important benefits of my survivorship, health insurance I had otherwise been denied, just because I had cancer.

Another big anniversary, 2004, I became a father for the first time and welcomed my oldest daughter, Madison.

Two years later, 2006, Madison would become a big sister to Emmalie.

In 2008, my life after cancer would change in a dramatic way.

This photo has been used many times on my blog. This photo was taken when I came home following my first heart surgery, an emergency double bypass that would be attributed to damage from the radiation used to treat my Hodgkin’s Lymphoma. This would be a major turning point for me. Because in spite of being told at that time that I was going to die, at any time from a fatal heart attack, I could not have wanted to live more. And to that, I credit Madison and Emmalie with giving me every reason to want to live. The thing is, I had no idea, this situation was not something once and done.

I had finally heard the term “long term cancer survivor,” and it was used to describe cancer survivors who faced late developing side effects from their cancer treatments. Health surveillance of me would discover that I had additional damage to my cardiac system (specifically my heart), my lungs, my gastrointestinal system, my thyroid, my upper torso (neck and shoulders), my spine, and more. The damage from my treatments was finally progressing enough that it was getting noticed.

I was determined though. Like I said, my daughters gave me the will to want “tomorrow,” a lot of “tomorrows” in fact. And that will would be tested, again and again.

Between March of 2012 and February of 2013, I would make five trips to the emergency room, one via ambulance again facing a potentially fatal event, the others less critical but serious nonetheless. Each time, all I could think about, were my daughters.

2014 would bring other challenges, not cancer related, divorce from my second wife, mother of my daughters, and the loss of my career, due to the rapid declining of my health. My determination to see my daughters grow up, into adulthood, could not have been any stronger.

In 2019, I would have my second heart surgery, a remnant from my 2008 open heart surgery, that had been left unrepaired, in what turned out to be false hopes of correcting itself via the open heart surgery.

Of course, later in the year, Covid19 would strike. But as my doctor once told me, “I cannot stop or reverse what is happening,” and that meant I would be extra challenged in 2021, not once, but twice. I needed to have my left carotid repaired, and eight months later, my third heart surgery, both performed while not only trying to not get infected with Covid19, but under the strictest of protocols in the hospital.

I expect a few of the upcoming years to be uneventful, at least I hope, which will allow me to steamroll to other exciting things that will happen in my life; my daughters graduating high school, college, and hopefully marriage and grandchildren. These were things I did not expect to see when I was told that I had cancer, and definitely did not expect to see, following that first heart surgery. But now, I will do all I can, and expect everything of my body not to let me down, so that I can complete my life.

On a final note, and yet another reminder of why I do not necessarily celebrate this day, I have a fellow survivor, going through open heart surgery today, again, another survivor of the treatments that cured her of her Hodgkin’s. But she is an even stronger fighter, in that she has beaten cancer multiple times. Gail, you are in my thoughts, and I will be looking for the updates on your recovery.

As I always do on this post, I will close with my annual expression, “as I continue down the road of remission, I will keep looking in my rear view mirror to make sure you are still following me. And if you are not on that highway yet, hurry up. It’s a great ride.”

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