Cancer Leaves a Mark - Again and Again

by GregP_WN

You've heard that saying when someone gets smacked upside the head by a swing set or some other crazy thing happens in a video on AFV, "that's gonna leave a mark". When you have cancer it leaves a mark too. Several of them, some are obvious, some are subtle, and some are hidden. With a history with cancer that covers 32 years of my life, I have a lot of marks, these are just a few of the latest ones. 

Cancer Leaves A Mark, Behind Every Scar Is A Story

Speaking, or the inability to - One of the most profound marks my latest round of diagnoses has left on me is the inability to talk. A lot of people might be happy by that, they have heard me too much over all these years! But for me it has been the biggest life changing thing that has happened. 

Just imagine yourself in this position for a minute and consider how it would affect your life. 

Donna and I sit 6 feet apart in our living room, yet I have to text her anything that's more than one or two words. Or write it on a marker board and hold it up. If she is at the other end of the house and yells a question to me, I can't answer, I have to get up and walk to where she's at, tap her on the shoulder and mouth my answer. Any "conversation" that takes place between us must be done looking at each other so she can see my lips. I have an electrolarynx vocal device that helps some, but most people can't understand what I'm saying. Donna is getting better at it, we adapt. 

Eating - The simple act of eating. Most people do it every day, several times a day without even thinking about it, it's like breathing, it just happens.  Normal eating and swallowing is a thing of the past for me. My throat was partially rebuilt after the laryngectomy. Muscle from my chest was taken out and used to "build" a section of my esophagus that was taken out. That section is "floppy", no muscles to assist in the act of swallowing. Some things, at some times, slide right down. Other things, at other times, don't go down at all and actually go up and out of my nose instead. I'm a hit at all of the kids birthday parties. As time goes on this issue is getting worse to the point of now I'm almost on a liquid diet. I have lost about 30 pounds so far on this "cancer diet", but it's a program that I don't recommend. 

Breathing - like eating, is just something that we do without thinking about. It just happens, it's a part of our body physiology that is automatic. Until it becomes difficult, then you start paying attention to it. My laryngectomy was a major, life altering surgery. One of the things it did was to change how and where I breathe from. My trachea was disconnected from my sinus cavity and relocated to a stoma in my neck. So now, I am what is referred to as a "neck breather". I simply breathe through a hole in my neck. No big deal right? I can still breathe. 

Scars Are Tattoos With Better Stories

The differences are many. First, your sinus cavity does so much that you don't even know. It moisturizes the air you breathe, it warms it, it filters out things that you don't need to be sucking into your lungs. Now, I just breathe through a hole in my neck straight to my lungs six inches away. Without precautions, there is no filtering out of anything. I can take the dogs out at night without my filter in my stoma and it seems like every bug flying around outside has been waiting for me so they can land in my stoma hole. Suck one of those big bugs down and things get exciting!

I have a device that attaches to my stoma that holds an "HME", heat and moisture exchanger. Its job is to filter air, retain heat and moisture in my lungs to mimmick what my sinus cavity used to do. It is held in place with a cloth velcro strap that goes around my neck. So now when someone looks at me the first thing that they look at is that stupid "strap thing" around my neck. Cancer left a big mark on that part of my life.

Taste and smell - I can no longer smell most things, and what I can taste doesn't taste like it used to. Eating, when I can, is more out of habit and necessity than for enjoyment anymore. 

Think about the sense of smell, and how many times it has brought enjoyment to your life. Have you ever been sitting outside on your patio and caught a the smell of jasmine flowers, or honeysuckle? How about the scent of your spouse's perfume or cologne? The smell of a little puppy cuddling up in your face? How many times have you had a sensation of smelling something that instantly sends you back in time to a place you loved, a spot, a point in time, or a person? You walk in the house after working hard all day and smell a pot of stew cooking on the stove. The house smells delicious. All of these are gone, boom, cancer left a mark right on my nose. 

Working - You have probably read a quote many times that says "be thankful for everything you have in your life because in the blink of  an eye, they can all be gone". This is so true, but most people don't give it deep thought. 

You Deserve More Than A Bunch Of Scars

Consider your job, whatever it may be. How would you perform it from now on if you couldn't talk? How many things do you do through the course of a day that require you to speak to others. Do you use the phone? That simple act is over, no more talking on the phone. 

For my business, I used to give estimates, that's hard to do when the customer cannot understand what I'm saying. I can't answer the phone anymore, talking to employees to give instructions, training, hiring new employees, dealing with suppliers, all require talking to people. Now most of those things are either done for, or being done in a limited way by others, or I go to a jobsite/customer's house for estimate with one of my guys that understands everything I say, he translates. It's an awkward way of doing things, but it's all I have. 

Sleeping normal - That's over. I haven't had a "normal nights sleep" since last year. Since I had the stoma put in, I have to be careful of how I lay. If I roll over and cover up my stoma, it's like putting your thumb over a straw hole. 

Drainage is constant, and never ending  The laryngectomy that I had changed my breathing and everything else that happens in the sinus cavity. So when you have a runny nose, I have a runny nose and mouth but I cannot blow my nose. It's a strange feeling to not be able to blow your nose. I wake up each morning with a feeling of drowning. It takes some getting used to, but I adapt and deal with what I have, there's nothing else I can do. Complaining about it won't make anything any easier and won't change the situation. 

A Day Without Pain - Doesn't exist anymore. I wake up with pain around my neck from laying still for however long I managed to sleep that night. Sort of like when you've worked outside all day and come inside, take off your work clothes, get a shower and sit down. When you try to get up you're so stiff and sore that it takes some doing to get you up and moving. That's how my neck is in the morning. 

It takes about 3 hours for things to get loosened up to the point of not hurting anymore. I'm usually good through the day until late afternoon when the day's activities start telling me that I'm not the body I used to be. Sometimes I can hear my body asking me "what were you thinking"? I used to work 12 to 16 hours in a day and not have the pain that I have now just getting out of bed. Cancer leaves a mark in ways you probably never even thought of. 

Financial Mark - Cancer leaves a big mark on the family finances, you might as well say that it cut's it off and kills it. Very few American families could afford a cancer diagnosis and treatment on their own. You would have to be rich, extremely rich. We have insurance that covers about half of the bills, I have a running total at Vanderbilt that right now sits somewhere in the 350 to 400K range. I don't even keep up with the details anymore, it's like monopoly money.  Most bankruptcies are filed due to medical expenses. Anyone who thinks that we don't have a problem with our insurance system and medical system has never had to deal with a serious illness. 

Financial Toxicity

Life Changes - Our life is not recognizable compared the time prior to 2019. I have basically quit working due to not being able to. Social Security of course thinks I'm not disabled. We have weekly trips to Nashville to Vanderbilt for treatments. Some of these are all day events with appointments happening every couple of hours through the day. Other days are over in 3 or 4 hours. We have a tentative schedule that stretches out for 2 years, that will change as my condition changes or issues arise. It's hard to wrap your head around thinking that your life for the foreseeable future is revolving around treatments, doctors, scans, injections, tests, blood work, stress, doubt, fear, hope, and a positive view.

When it comes to your basic lifestyle, daily activities, schedule, etc. Cancer leaves a big mark on that. So big you won't recognize what your life used to be like. 

Scars and Body Changes - Most people think about scars, loss of hair, weight loss, etc. as the obvious way that cancer leaves a mark on you. And that is true. But simple scars from surgery are the least of the scars. 

There are other scars, mental and physical. Your mind won't let you get too far through the day without reminding you that you are a cancer patient. There are times that your body will remind you of that too. Depending on how serious your cancer is/was, it may not be often or as serious. For me, it's when my eyes open in the morning. Then for the next several hours of the morning my body reminds me with everything that I attempt to do. 

She Wears Her Scars

Mentally, it's a challenge to not slide down into the well of negativity. I have plenty of reasons to slide there, I am on diagnosis number 5 right now, each one has progressively gotten more challenging, I can't help but wonder how many more chances I get or when my time will run out. 

Every time someone dies that I know I think about how their life was compared to mine. Their health compared to mine, their age compared to mine. Then I wonder why them and not me? That's a whole subject that many articles and books have been written about, "survivor's guilt". 

If you ask most people who are not cancer patients, survivors, or haven't been a caregiver for someone how cancer affects the patient's and their families lives, they will quickly tell you about the scars and side effects they had during treatment, after that, most people don't know about all of these other ways that cancer leaves a mark. And these are just a few of them.

Despite all of these marks cancer has left on us, I am still hopeful for the future, confident in the new treatments that are being used on my latest diagnosis, and grateful for the family and friends that have been with us through this. 

Are you a cancer patient or survivor? How has cancer left a mark on you? Please comment below and let others know they are not alone with these issues. 

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