"Autoimmune disorders", Anwar Sadat, Breast Cancer, cancer, Depression, Gomez, Lung Cancer, Mental health, Post Traumatic Stress Disorder, Sjogren's Syndrome, Washington DC 14th Street Bridge Plane Crash, Women's health

Anniversary – Part 1, by Beverly Hicks Burch

Anniversary – Part 1

By Beverly Hicks Burch

I am approaching an anniversary in a few days (Oct. 25th). It’s an anniversary I hope I don’t share with too many people. You see on Oct. 25th, 1995 a thoracic surgeon removed 60% of my left lung because of cancer. It’s so hard to believe it’s been 13 years. It actually still feels like it happened such a short time ago. Unfortunately, it was not my only experience with this type of surgery and cancer. In Jan. 1982, part of my right lung was removed.

This anniversary makes me nervous. As a cancer survivor we tend to count anniversaries…years if you will, for a reason. The five year survival period is considered a benchmark of sorts. You start to breathe a little easier if you have survived five years past an occurrence. Each five year increment also tends to give you additional peace of mind…you have warded off and defeated the big “C” a little longer.

I was 13 years past my first occurrence when out of no where the second incident catapulted into my life with a vengeance. To say it was a shock it like saying Hurricane Katrina was a thunderstorm. I was almost 15 years “safe”! I had even avoided smoke filled rooms. Why?! And, now I am once again at that 13 year benchmark…

My lung cancers could almost be considered a fluke. I was a non-smoker, had never lived with a smoker nor had a worked in a smoke filled environment. Sometimes lung cancer survivors tend to carry a “black mark” on their slate of life…a stigma if you will. Why? Well, many people hear “lung cancer” and automatically decide you were a smoker and as a result brought the disease upon yourself. I feel as if I always need to qualify my cancer history by saying, “a two time non-smoking lung cancer survivor”…and, boy is that ever a mouth full…

Even today when I tell someone I’ve survived bouts with lung cancer two times and had never smoked most people seem incredulous. You can see it in their eyes…” You must be kidding!” They seem to have a need to find a cause…a reason…it’s almost if they can find the reason “why”, then they’ve distanced themselves from such a fate. They usually stand there and tick off the potential reasons “why” and as each reason is answered with “no” there is just a tinge of panic in their eyes.

Then, there’s the opposite reaction…from smokers. Their response is usually, “Well, there you go. You never smoked and look at you. I’ve smoked all my life and I’m fine, cancer-free. Why should I quit?”

Well, let me put it too you this way…if you had a friend who was nearly hit, or was hit crossing the street and survived, would you just go and stand in the middle of the street daring cars to hit you? Would you think “Well, look at so and so? See what happened them. I’ve been crossing the street all my life and have never been hit, so why should I think it would happen to me now?” I have one “intelligent” response to that…duh?! When I get that response from smokers I feel like lifting my shirt up to reveal my large scars and asking, “Do you really want to tempt fate for this?!”

Do not tempt fate! Especially if you are a woman! Every year during breast cancer awareness month I get a tad irritated. It’s not that I think breast cancer awareness is a bad thing. Nope, it’s because since 1987 more women have died from lung cancer than breast cancer in this country! That’s a pretty scary thought especially since we know breast cancer has been one of the major causes of death in women for over 40 years.

My first occurrence happened when I was just barely 28 years old. My baby was 18 months old. I was scared I would not get to see him grow up. A mother should never have to feel that emotion. It rips at the fabric of your heart and soul. I’ll never forget that time.

My cancer was found by the sheer fluke of luck or, maybe Divine Intervention as I like to think. It’s odd, but I always associate that time period with the murder of Anwar Sadat. While I was going through the agony of discovery and waiting and at war with my body, a man struggling to seek peace was murdered half way across the world… (This poses a more current question: If militants and terrorist will do this in their own country, what else would they do in the USA?)

The cancer in my right lung was a carcinoid tumor, a form of a neuroendocrine tumor . This type of cancer is rare and very slow growing, sometimes taking 3 – 5 years to grow to a size substantial enough to be discovered and by then it could be too late for the patient. This type of cancer starts out as a microcarcinoid and grows into “the big guy”…a true carcinoid. Finding this type of cancer can be a life saver because in the early stage it is treatable…usually with surgery.

Unfortunately, even with surgery there is no guarantee you will be clean. Small cells can remain in your body that will cause a new occurrence. Quite possibly you could live for years with carcinoid syndrome and as one physician explained to me eight years after my first surgery, “you could have carcinoids throughout your body and not be aware of the fact”.

Carcinoid syndrome involves a plethora of symptoms including: flushing of the face and upper body, wheezing, diarrhea, and a fast heartbeat. Because this is a type of neuroendocrine cancer the tumors can secrete serotonin and a test to check excessive serotonin levels is a useful diagnostic tool.

I often have suspected that my cancers are related some how to the many autoimmune disorders I have. In autoimmune ailments your body creates antigens that read parts of your body as foreign. In other words these antigens see these substances or objects of your body as things that shouldn’t be in or a part of your body and its systems.

Normally this process works as it should. For example, when you cut yourself and it starts to become infected. Your body’s proper systems…blood in this case…will send the proper tools (antigens, white blood cells, etc.) to the affected area…to the cut to combat the infection.

But, in autoimmune disorders, there is a disconnect somewhere…a malfunction. For instance, in lupus the body may read the liver or spleen as unneeded, unnecessary and even dangerous to your health. As a result, the body will begin to attack these organs to destroy them in an attempt to make you safe and well. But, it’s all a big mistake and it can and does kill the patient over time.

One disorder I have is very similar to lupus. Some of the organs and systems attacked are different…others are the same. My ailment, Sjogren’s syndrome carries an increased risk for non-Hodgkin’s lymphoma…yes, a cancer. In addition to attacking all moisture producing glands in my body and my joints, Sjogren’s can affect the lungs. There it is…

The biggest number of carcinoids are found in the gastrointestinal system, but like mine, they can be found in the lungs and other parts of the body. I have a first cousin who was treated for carcinoid in her appendix. For years when I went to a new physician they seemed more intrigued with the fact I’d had a carcinoid in my lungs than in the problem I was there to see them about. That was extremely frustrating to me and really counter productive to my health.

Thoracic surgery is no picnic. It is major surgery. As one surgical nurse explained to the ex, it is more severe than open heart surgery in many ways. It’s very intrusive, the patient’s upper body, for all practical purpose is almost cut in half. My incision(s) runs from just under my breast, across my side and ribs and onto my back to within a few inches of my spine. Once the incision is made, the ribs are either broken and spread apart, or a section is cut and removed from the ribs for the same purpose. They are spread apart to allow access to the lung. In my case, both techniques were used. The first time some of my ribs were broken, the second time a section was cut and removed.

I don’t recall how long my surgery lasted. Let’s put it this way…it wasn’t a quickie. I was placed in ICU and the first thing I remembered was a bright light as I regained consciousness. I asked the ICU nurse if it was cancer and she replied, “The doctor will have to speak to you.” I knew then it had been cancer. My first surgeon…an angel…told my family we should thank God the tumor was found when it was.

Although I did go through a major depression after my first surgery, I eventually bounced back…or I tried to pretend I had. I can look back now and plainly see I was “cruising for a bruisin’”.

The depression in hindsight was predictable. In the two years leading up to my surgery I had experienced several life shaking events.

I had gone through a difficult pregnancy (I was hospitalized twice and had to spend a good portion of the time in bed due to illness.) My last living grandfather died about a day after I returned home from my first hospitalization while I was pregnant. While pregnant, the ex, Gomez the unremarkable, had a car accident that totaled his vehicle. It was his second in four years. My son was born a month early and as a result his fetal breathing system didn’t shut down. (Heart problems are common in the newborn of Sjogren’s patients.) My baby boy spent the first two week of his life in NICU (neo-natal intensive care).

Then, the tumor on my lung was discovered and “watched” for three months. As I lay on a cold table while my lung was being scanned, I asked one physician, a radiologist, what could be on my lung. He replied, “Well, it’s a 33% chance it’s cancer, 33% chance it’s a calcium deposit and 33% chance it’s an enlarged lymph gland. (I have learned since there are other possibilities.) He then turned and left the room as I shivered on the table. So much for A+ bedside manner…

I lived through a holiday season knowing something angry was growing on a vital organ…and I spent the season wondering if it would be my last with my sweet baby boy. And then, surgery was scheduled for Jan. 1982.

As I counted down the days during a very frigid January, an Air Florida airplane hit the 14th Street Bridge in Washington DC. As I watched victims being pulled out of the freezing waters of the Potomac River, I realized we were in a swiftly changing world and I wondered what I would miss should my outcome be as disastrous as that fateful flight. I survived on Faith and prayers…

So, that my friends set the circumstances surrounding me prior to my first surgery. Post-op depression is severe enough to deal with…but, factor in a possible case of post-partum depression and everything else and well, it doesn’t take a rocket scientist to see a train wreck coming…

My train wreck lasted about a year. Sometimes I think that period was the beginning of my Post Traumatic Stress Disorder. It was a dark time. Once again I was surviving solely on Faith and prayers.

I would go days without eating and my weight plummeted. As an anorexic survivor, I was already painfully thin. At one point my weight dipped below 100 pounds. I have one picture taken a few months after Gomez had his first car accident in 1976. (He had broken his neck in the same place Christopher Reeve did…it was a miracle he lived and didn’t have any paralysis. I spent months nursing him back to health.) In this picture, I have the typical “lollipop” head…a characteristic of someone waaaaay too thin. By the time I became pregnant I weighed a whooping 112 pounds and was back down to that weight within about two weeks after giving birth. Depression did nothing to stabilize my weight…food literally made me sick to my stomach during these dark days.

After that year, I decided I was tired of living at the gates of hell…feeling the flames flicker at my feet…that is my description of that dark, depressing time…

© 2008 Beverly Hicks Burch All Rights Reserved.

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