Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

A New Normal


There are common thoughts in the journey of cancer and survivorship. From diagnosis through treatment, I know that all that I wanted to know was long term survivorship possible, beyond the five years that I constantly kept hearing about? Strangely, once I completed my treatments, combined with achieving the status of remission, my thoughts quickly turned from long term survival, to when does my life get back to what it used to be, “normal.”

While the cancer experience is definitely physically demanding, enough attention does not get paid to the emotional and mental toll that is taken on the patient. Sure, there is fatigue, fear, doubt, stress, paranoia and more that swirl around in the mind of someone going through cancer. One thing that we do not realize happens during the time from diagnosis through treatments, unbeknownst to us, we lose something very important to us. And we do not recognize it until after we are done with treatments, yet it plays a very important role in us moving on in our lives, in our survivorship, control. We go from doing what we want, when we want, to, you have to be here at this time, we are going to do this at this time, and a patient has no control of that. Decisions are no longer made by the patient, but by those providing the care. And it is in our best interest to do as they are recommending if we want to reach remission.

When we lose things, such as our car keys, our wallet, material things, it produces an inconvenient anxiety. When a loved one is “lost” or passes away, we mourn or grieve. The loss of control then, I feel would fall in between those two extremes. Without any thought, once treatments are over, the “keys” are handed back over to us, and we are supposedly back in control. But why does it not feel that way then? If the treatments and the tests are done, when does it start to feel “normal” again?

Control and normal are two different things, yet combined create an interesting dynamic, an experience that must be dealt with, and accepted. Soon, we realize what that loss of control did, and what it took from us, normalcy. And once we realize what we considered “normal”, and that particular “normal” is gone forever, we soon come to terms, this permanent loss, is similar to the loss we experience when someone passes, and must be grieved. We need to give ourselves the chance mourn what we looked at as what was normal in our lives, before the cancer.

Unlike the passing of a loved one, we have a hope or even a second chance with remission at normalcy, but something we in the circle of survivors call “the new normal.” As a cancer survivor, we all get this new normal, and it is exactly that, new and whatever we want to consider as being typical in our lives going forward.

What exactly is normal? What do you consider normal? What makes things or life normal? If normalcy is based on never seeing doctors again once in remission and totally forgetting you had cancer, nope, not going to happen. That normal is gone. Over decades, medicine has finally recognized late developing side effects as a reality, not necessarily for all, but for some, and the problem is no one knows who will develop these late effects. Therefore, ALL cancer survivors should continue following up with their primary care doctors once they are released from their oncologist, with guidelines from the oncologist what issues to keep an eye out to potentially occur, not definitely, but possibly. That is a new “normal” especially if you are not one to have ever seen a doctor regularly (besides the oncologist).

Aside from the medical new “normal,” I have come to realize that each day brings a new “normal.” And because I am someone who has a variety of late developing side effects, the “normal” for that day depends on if any of those effects are gathering attention or not. What I have found, and actually accepted, is that this is okay. Another new “normal” I have been able to achieve, is how I deal with stress, much better.

Perhaps my most important “normal” however, are my daughters. Becoming a Dad, now decades ago (a surreal thing to say as a cancer survivor), has been the most normal part of my life. There are no quotes around the word normal this time, because you can quote me on this, for me, becoming a parent has been the best kind of normal I have gotten to experience. And each day, I look to build on that normal.

The truth is, normal is what you make it. And that is what makes it “new” after a battle with cancer. Because now, you, the individual are the one deciding what is normal.

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.”

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