I am going to need to offer a bit of a warning to this post. What you are going to read will be quite shocking, maybe even quite overwhelming. In upcoming posts, I will be finally getting to the most important post I have ever written. But before I can do that, I want to disclose to you, just how qualified I am to discuss these things, what drives me.
This is what I allow everyone to see. I have my reasons. The first, I do not want pity. I want to lead a normal and healthy life, just like so many others who have been blessed with perfect health. I do not want to be helped to do simple things. The second reason, unless you are a fellow cancer survivor yourself, the things that I am dealing with, the health risks that I face, the uncertainties, can be overwhelming. Many of those close to me have not been able to accept the late effects that I deal with, and some have simply given up on me because they do not want to hear about the next medical events as they come up.
But as the expression goes, about the book and the cover, I am choosing now to open the book. As I said, what you are about to read, it is going to be difficult. While many consider surviving cancer to be a good thing, and I do consider surviving cancer, especially as long as I have, a good thing. But my survival has come at a price. And as you will see, and I am sure you would hope, diagnostics, treatments, and risks, still have such a long way to go. I am planning on publishing the next post on what I hope will serve each and every reader of “Paul’s Heart” to be the advocate that each patient needs to be for themselves, so that survival has a chance to be more tolerable.
And with that, here are my qualifications to speak as an advocate for better diagnostics, treatments, and follow up care for all cancer patients and survivors.
The Heart
It was April of 2008, when I first discovered that for 17 years, my body was developing side effects from diagnostics and treatments given to me for Hodgkin’s Lymphoma. I needed to have emergency heart bypass surgery due to radiation damage to the main artery going to my heart. Following that surgery, it was also discovered that I have valve issues with two of my valves from both radiation and chemotherapy. However, because of risks from the surgery, any corrections of these valves must wait, until the risks of the condition itself, become worse than the surgery to correct them. Simply put, a ticking time bomb. And if that were not enough, many of the survivors that I have known over the years, who have had this surgery, have survived that surgery, only to suddenly succumb to unsuspecting infections. I am hoping that by my knowing this risk, should the situation arise, I can convince those with my care of the precautions that need to be taken.
The Lungs
Damage from radiation and chemotherapies has resulted in the loss of the lower lobe in my left lung, leaving my lung capacity at a measured 76%. I also have spots on my left lung that are followed up every other year, to watch for growth in the event that they become cancerous. These spots are unknown, but known that they are growing.
A combination of cardiac and pulmonary, I deal with shortness of breath, labored breathing, with any severe weather like humidity and cold. Any walk with even the slightest of incline or steps can leave me struggling for breath.
Carotids
Both of my carotid arteries are narrowed from radiation damage. Another issue that is monitored until it becomes bad enough to do anything about, the risk of stroke form the surgery itself will only be considered once the risk of stroke from the narrowing of the carotids is greater.
Spine
Chemotherapy has resulted in me developing osteopenia, meaning that my bones are at a higher risk of fracture. Along with facet joint arthritis, both conditions exist in my lower spine resulting in pain I deal with on a daily basis. There is also quite a bit of discomfort in my hips.
Muscle Damage
I have been diagnosed with Radiation Fibrosis Syndrome. I have lost so much muscle mass in my upper torso, it is visible to even non-medical personnel. Flexibility and mobility have both been lost. I am at a higher risk of muscle tears. I am not able to lift my arms above my shoulders.
And because of the muscle loss in the back of my neck, my head pulls forward from the remaining muscles in the front of my neck. This is referred to quite common-like, “drooping head” syndrome, because the appearance is obvious, the head droops forward. I have spent years training my neck to keep my head lifted up. Yes, everything courtesy of radiation damage.
Thyroid Issues
Yet another result from radiation damage, my thyroid has been reduced to a shriveled misshapen organ, basically shut down. I take a prescription to keep it functioning properly, but that does not prevent the many cysts that develop each year. So far, the cysts have been benign, but due to the risk of developing thyroid cancer, one of the cysts actually required a biopsy.
Loss of My Spleen
As part of my diagnostics, my spleen was removed. Making perfect sense as Hodgkin’s being a cancer of the immune system, often times, the spleen is involved, as was my case. However, at one time, it was believed that we could live without the spleen, turns out medicine was wrong. And because of that, not only is my ability to survive a cardiac event compromised, I can also not defend myself against common illnesses such as the flu, pneumonia, strep throat, chicken pox, and more. I cannot even be around anyone receiving “live” vaccines for this reason.
Esophageal
Radiation damage has resulted in several issues with my esophagus. The most physically obvious, is difficulty swallowing. This gets somewhat relieved following my annual endoscopy, only to return. The I have something called a Venker’s diverticulum. It is a flap in my weakened esophagus that traps particles of food, which decay, and get inhaled into my lungs. This has resulted in two cases of aspiration pneumonia, with one case reaching septic levels. And then there is the diagnosis of “Barrett’s Esophagus”, which leads to an increased risk of developing esophageal cancer. Combined with severe reflux, and these risks are quite high.
Miscellaneous
There are minor, “lol”, if you want to call them minor, at least in comparison to all the big things I deal with, chemotherapy left me sterile. There is some hair that never grew back from radiation damage. And I have a frequent issue with unexplained bleeding.
Emotional
I battle “Survivor’s Guilt”. That’s right, guilt for surviving cancer, for surviving my late effect issues. Wondering and waiting for the next shoe to drop. Fortunately, because I am an advocate for my own care, I am not afraid to challenge a doctor to order a certain test, explain to me in detail every aspect of my care.
My issues cannot be reversed, only managed. And that is how I survive. So now you know what I deal with each and every day. Now you know why it is difficult as I say farewell to another long term survivor. This is why I struggle with news of patients not being properly followed up and also passing away.
So now, I am closing the book again. And as long as I can help it, you will still only see the cover. But that does not change what is written in the pages inside. I must take care every day to prevent exposure. I must make sure that I do not physically stress my body to cause any kind of injury with my increased risk. But that is a burden I place on myself, no one else.
But like the post I wrote about the classes of survivors, this is why I consider myself in the third class.
Up next, the project that I have been working on for several months. The post is coming up next.
