Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

A Lesson Remembered


The expression goes, “lesson learned” (actually so many different variations). If you read my last post, “Raw And Unfiltered,” I am titling this post, “A Lesson Remembered.” The lesson that I remembered was learned long ago, and having two college age daughters, it is a lesson that I have been trying to ingrain in their thought processes, their confidences, their lives, often. I have to modify that “dad talk” a little bit, with just a disclaimer, that sometimes we forget that sage advice.

So what happened two days ago, ended up being the beginning of a very, very bad day. The opposite of King Meidas where everything he touched turned to gold, it appeared my day was turning into one giant pile of poop emoji, getting bigger as the day went by. To be fair, each issue that came up, was bad news, with the potential for one situation turning catastrophic. Everything piled together was like a dormant volcano building up so much pressure inside its dome, bound to erupt as the lava needs to go somewhere, I felt like a volcano. And to no surprise, I did erupt.

Taking a slight step back, when I have my discussions with my daughters, a.k.a life lessons, being in college, pressure is something that they often face, whether it be an exam, project, or group event, and not everything works out perfectly or as expected. We talk about the things we have control over, and the need to let go of what we cannot control. I also tell them about the need to change their thought process and the way to do that is to change the oxygen going to their brain by temporary altering their breathing, staggered, a trick I learned in therapy a long time ago. Closing my eyes, or focusing on a particular object, breathing in through the nose slowly for a count of four, then with lips pressed, breath out through the mouth slowly for a count of five. I repeat this three or four times, more if necessary, until I get my thoughts to slow down. Once that happens, I can think clearly again, and deal with the subject at hand.

But Wednesday was different. Only having time to look back now, I got that phone call on an empty stomach. I was definitely not expecting that phone call, and definitely did not expect that news. I was completely taken by surprise. Under normal circumstances, I would have handled things much differently than what I wrote last post. I know that as fact. Before I could enact my breathing exercises however, INCOMING!!!!!, I got hit with some more bad news, totally unrelated, and totally unexpected. Having not resolved my earlier problem, now I had a second one to deal with simulaneously, all the while, not changing my thought processes. This was not going well, as my reactions and responses were getting worse, and somewhat aggressive.

And then a third call came, and with the feels of a “sucker punch,” the caller in a calm voice, and kind of confident, like “no big deal,” hit me with an issue that had the potential to turn my life upside down. That was it. The dome had cracked, the volcano was ready to blow. My reactions to that caller, who was just a “messenger” doing their job, were angry, unprofessional, and for his sake, undeserved as he did not create the situation, others in his chain had done so. But I was going to make it clear, that a terminating ending was not an option, and nor were any of the solutions he was reading to me, likely from a prepared manual. Again, I normally think of myself as a calm and rational thinker, but unable to get to that status from the first call that came that day, I was in a position I did not recognize, nor did it feel good. Remember that, “it did not feel good.”

Several hours after that final phone call, my thoughts had stopped spinning like a tornado in my head. I was once again able to think and process, and knocked out one of the issues, actually the second in occurance right away. Then I took on the original issue that started it all, and within a half an hour, speaking with someone else, an advocate of mine, that issue got taken care of. Finally, the biggest problem of all was all that was left, but only that to deal with. I began to put together a strategy to fix what this particular company had done to me, and was unwilling to make right on their end. At the end of the day, neither of us stood tall and victorious, they did not get their way, and I was not given any relief, but using the control that was put back into my hands, and my managed thoughts, I came up with a different solution, not perfect, but will put things back in balance.

Phew!

Wednesday took a physical toll on me, one that I had not felt in a long time, and honestly, that long time was not a good time either, in fact, it almost killed me. Just like in 2008 with my heart blockage, I had put my body, and my heart, under so much stress two days ago because of my reaction. But wait, it wasn’t my fault, those behind the phone calls caused the stress. Sure, but I know that I do a much better job of controlling my reactions, which is something I constantly counsel my daughters when they come to me, feeling pressures at school.

Adulting my daughters is a whole different stage of parenting than Barbies and school stuff. The pressure, a good pressure, to make sure that I teach them as much as I can how to handle life, how to handle situations that get thrown at them as adults like I had to deal with, continuing to build their confidence, and a whole lot of personal management skills such as: communication, controlling emotions (duh), problem solving, time management (which proudly they do very well), understanding money and decision making. And then there is the personal stuff: self-respect, empathy, self-care, and so much more.

Honestly, these are all things that I wish had been taught to me, but weren’t. So I was and still am winging it. But from the results they are experiencing, while I can take credit for giving them that direction, their results are all their own.

I had Chinese takeout for dinner on Wednesday, and this was my fortune inside my cookie. Too bad I didn’t have it on Tuesday, the heads up would have been appreciated, and much less stressful. When it comes to my daughters, I do try to lead by example, if I am going to talk the talk, I walk the walk. And I have shared this mistep with them, as well as how it made me feel physically afterward, and importantly, not to allow myself to respond that way again. I can get the things done I need, or maybe sometimes I cannot. But the physical stress on the body and mind is a game-ender. I just needed that reminder.

Raw And Unfiltered


(photo courtesy of CFHP)

When I write my posts, really when I write anything, I try to write as professionally as I can. Which means that I do not normally publish anything immediately, so that I can proof read for errors and mispells, or perhaps tone down the temperature of a topic if needed. I want to come across unbiased, informed, and if necessary, looking for or offering a solution.

This post is not going to be one of those posts. As I write this, I am not going back and reading over it, double-checking anything. I am certainly not going to turn the temperature down on this post. I’m fucking pissed!

To preface, anyone who has followed my blog, knows I have a long and complicated health history. Also well known is my reliance on the caregivers that I have established over my both my lifetime and my survivorship. If there has been any issue ever, it has been when I was left to my own device due to an emergency where I had no choice in the caregivers assigned to me. But if a doctor was involved in my care, it was not just because they were that good, that knowledgeable, but because I have trust in them.

This year has been a difficult year in my care, not because of conditions or status of my health, but I have lost direct care of three of the most important caregivers in my care. Some due to time, and I could not be selfish to expect them to stick around. Some due to corporatization and interference taking away not only their ability to practice, but also their passion for what they are truly blessed at.

A phone call I just received a little over an hour ago (I have spent the previous hour before sitting at my keyboard putting contacts out to figure out what the Hell to do next), explaining to me, that I was going to need to find a new cardiolgist. I tried to explain to the penpusher that I did find the new cardiologist, in fact he came recommended to me, I had already been referred to him by two of my former doctors including former cardiologist.

This penpusher went on to explain I lacked a proper diagnosis to see this cardiologist which had I had a drink in my mouth would have been spit up all across my windshield as I was driving. I asked her what diagnosis would that have been. She responded “amyloidosis.” I had heard of it before, likely on television, but definitely not something in my records, which with my heart alone has an extensive list of issues along with the other late side effects with my body that I deal with. It turns out, “amyloidosis” has something to do with abnormal proteins with the body, and since I am dealing with cardiology, I am guessing it has something to do with impacting the heart. Well, the one thing I know I do not have an issue with my heart, is abnormal proteins. A blockage to the LAD and RCA main arteries to the heart, aortic and mitral valves, a left bundle branch block, and some electrical thing I don’t really understand, but abnormal proteins, no.

So one of the advocates I have working on this has gotten back to me, that this particular doctor I was referred to, who coincidentally does see other long term survivors with cardiac issues, is simply not seeing new patients, only if they have an amyloidosis diagnosis. It almost seems as if “corporate” has said “enough of those serious patients, you have enough.” And for those of you against universal health care because “you won’t be able to see the doctors you want,” I PAY FOR FUCKING INSURANCE TO SEE WHOEVER I WANT AND NEED TO SEE! and I am being denied by corporate for the level of care I need, whether it be by the provider or possible directed by the insurance company #luigi .

To be clear, I do not fault the doctor. I am losing them for a reason. Medicine is not what it used to be. Now privatized, medicine is all about profit over patient, even if you are paying through the nose for insurance to cover what is needed to keep you alive. As of right now, his “areas of expertise” still list in his top two skills, “cardio-oncology” and “cardiomyopathy and heart failure,” both of which pertain to my situation. But while I was referred to him, had an appointment scheduled because he was the best fit for my heart’s history, something happened corporate over the last month, and now I must find someone else.

Yes, I am more emotional right now about this than usual. I did not ask to have these health issues, and it isn’t like I did anything or have a family history. The issues I have with my heart and other body parts were done to me! This was the trade-off for beating my Hodgkin’s Lymphoma. Medicine did not know that all these bad things could happen 35 years ago. They do now. But the hard part is finding doctors who have some idea of understanding how much more intricate a patient, survivors like me are.

Last week, a fellow survivor passed, due to complications from her heart surgery, something many of my fellow survivors and I have gone through. I need a doctor that understands the needs of a Hodgkin’s Lymphoma survivor who underwent extreme radiation (4x the lifetime maximum exposure limit) and some of the most toxic chemotherapy drugs. I had one, and has now access has been taken away from me.

I’m pissed! I’ve survived 35 years because I have been able to find the care that I need which has not been easy. And now corporate says “no more.”

Lara


When I was diagnosed with Hodgkin’s Lymphoma four decades ago, long before the internet, before I even had my first computer, all I ever wanted back then, was to meet someone, anyone, who had Hodgkin’s as well, and survived a long time. Today, with social media just to name one resource, I regularly meet patients, new survivors, and countless long term survivors, many who are long passed my 35 years of remission. Whether I have met them in person, exchanged texts and private messages, or even just commenting on a personal post, if I have held just one exchange with someone, that moment has had an impact on my survivorship, from inspiration to information, every person whom I have shared words with in regard to Hodgkin’s Lymphoma and survivorship, has been a blessing to me.

My decision to have stayed active in the world of cancer all of these years also comes with a price, experiencing loss. Cancer patients are often given survival statistics of “five year survivorship,” and then are never given any thought of again after that. And only through the internet, did a certain population of childhood cancer survivors of Hodgkin’s Lymphoma, begin to search out for answers, many years past five years, in search of answers to unusual symptoms that had developed, to be discovered related to the extreme toxic treatments we went through decades ago, only to find out, we shared these issues with others. From then on, our numbers of survivors discovering these issues grew exponentially. Not only did we share symptoms, we shared infromation where to find help, doctors who had been studying these issues. Just as important, we supported each other, encouraging each other, that in spite of being treated as if we were hypochondriacs, the symptoms we were experiencing were in fact real. And then, something none of us probably ever considered originally, we shared the same desire to meet others who had gone through Hodgkin’s, we were now survivors who wanted to meet other survivors.

And that is where Lara comes in. I “interacted” with Lara over various peer support groups for Hodgkin’s survivors, eventually getting to meet up with her in person. Like me, Lara was an author, having written a book titled “Scars And Scribbles And The Power Of Crayons,” an unlikely title for a book about a cancer experience. But Lara had a unique way that she wanted to tell her story, about Hodgkin’s Lymphoma, from the voice of a 7 year-old child, her age at the time. She wrote about her childhood experiences, and sacrifices, while going through her treatments, but not written as an adult, but through the eyes of the child.

We got together several years ago, which was easy living aproximately an hour apart from each other. There was an “open” reading at her local bookstore, and she invited me to attend. Actually, she asked me to also participate. I had not written my book yet, had not even thought of it to be honest, so I really had no idea what I would read. So I chose to read the story I wrote for my father, “My Dad Was Just Like Me,” (found on this site). I have been a public speaker my whole life, whether in politics, in religion, or survivorship. This would be the first time I would publicly read something that I had published professionally.

We spent some time prior to the reading, sharing our health backgrounds and experiences in survivorship, and just as she was, always found positive ways to still look forward in life. It was a nice evening. Reading my Dad’s story in public for the first time seemed to give it a different perspective than watching others perform the story as it had been done. I could see why Lara enjoyed this type of activity. Lara’s invitation gave me the motivation to finally write my first solo book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor,” though it took my long enough to finish it (4 years).

As with many survivors with late side effects, the body can only take so much trauma, and decides it has had enough. It is bad enough going through a cancer experience, but to face it multiple times, or have to deal with the severe late side effects from the treatments used to save the life, is just cruel. But that is often the case with many of us long term cancer survivors.

We lost touch over recent years, likely by her choice as other survivors had lost touch with her as well. This life that some of us live with every day, and participating on various social media pages, can be overwhelming at times, so that when we have a good day, we just want to get away, or if we are having a bad day, there is fear and also possibly a burden we do not want to put on others. As inspired as we can be seeing the stories of other survivors, the risk we expose ourselves by personal involvement or actually meeing another survivor, and then pass away, can be devastating.

Like too many others that I have been blessed to cross paths in survivorship, Lara passed away last week. It is a risk we take when we open up our hearts to meet someone, “just like us,” when, back in the beginning of this history, was all that we wanted. But now, as yet another fellow survivor passes on, many of us, including me, are reminded of our mortalities. While I cannot speak for others, I know personally that I do all I can not to dwell on that, my mortality. Yes, I am all too aware of the flippant “you could get hit by a car crossing the street,” or “slip and fall in the bathtub and break your skull.” But having been exposed to the high doses of radiation and the toxicity of the chemotherapy drugs that I and others were treated with, actually “throws us into traffic” or “greases the tub” to increase the chances against us.

Make no mistake, and this was something I learned from Lara, I go to bed each and every night with plans for the next day. I have plans for my future. I expect my body to wake up the next morning. And at the end of the day, I will be grateful for that additional day that I got. And while there are pluses and minuses with survivors exposing them to additional negative thoughts or grief by personally interacting or meeting another survivor, and yes, hurt when we lose someone, in the end, I am glad that I took each and every opportunity, another lesson in survivorship I might not have thought about otherwise. Best yet, having memories of them in better days, not how their story ended.

Lara was a great friend. Lara was a great inspiration. Lara was a true survivor. Lara will be missed.

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