Companio Carcinoma E. L. Thomas
***WARNING*** I have written this article to speak to only those who smoke or have a loved one who smokes. There is nothing humorous, catchy, or entertaining in the following words. Simply stated, this is a true story about death and what caused it and what a person can do to keep from repeating this story. This is a view you will never think of until it becomes reality and a time when it will be too late to change it!
I have discovered a new disease. Well not really a new one but one I have taken on the onus of defining it for the ages. I call it Companio Carcinoma or in our plain English terms, Companion Cancer. You acquire this disease by osmosis when someone very close to you comes down with cancer. Really doesn't matter what brand of cancer it may be (there are hundreds) it just matters that someone you love dearly has this dreaded disease and now you have its companion.
It is different from the 'real' cancer in as much as there is really nothing attacking vital body parts of yours and you don't have to be treated with the same methods as someone who has the 'real thing'. But, as you will find out when you are infected this is a real affliction that causes great pain, horrible fear, and often a desperate feeling of hopelessness, kind of psychosomatic.
There is in fact only two methods for this disease to go into remission and this is when your loved one is cured of their affliction (or they go into remission) or when they lose their battle to the cancer.
My wonderful wife of thirty-nine years has just lost her life to lung cancer and when she took her last breath my affliction simply started to go into remission. I haven't had enough time to report if Companion Cancer really goes away but I suspect it will never be totally gone. My love for her is eternal and some of this disease I have will always be with me as will my memories of her and our love. I miss her but not the disease I acquired when she was diagnosed.
Herein I intend to explain about the symptoms of this dreaded disease and a little about the effects. I will be selfish in explaining about my affliction and will only shed light on hers as it relates to mine. I certainly mean no disrespect to my late wife as I will always love her. Nor, do I intent to slight any victim of the real disease of cancer. My effort in writing this is to provide another view of the 'real' disease of cancer and provide some people with another way of thinking about their personal habits. I also must recognize there are many forms of cancer and as many methods of coming down with this broad term of cancer. I also have sincere feelings for those people cancer chooses rather than them choosing cancer.
I intend for this missive to be aimed at one cancer in particular and for reasons to be explained in detail as I present my view of 'Companion Cancer'. This said I will be specific to my companion cancer being caused by my wife's lung cancer.
Scientifically, she was diagnosed with Non-Small Cell Lung Cancer (NSCLC) and further the term 'squamous cell lung cancer was mentioned sometime later in the diagnosis, more about all of this later.
The onset of the disease:
My wife had a disease called Scleroderma and if you have never heard of this let me tell you it is as terrible as cancer itself. Scleroderma is a disease of the auto-immune system where it causes the immune system to go out in the body and attack the good parts. There is no cure or treatment for Scleroderma and thus if you are shackled with a bad doctor when the onset of Scleroderma begins you pay the price. We were shackled with a bad doctor who treated the Scleroderma with massive doses of steroids and ignored the Pulmonary Hypertension and this allowed the Scleroderma to destroy the Kidneys. A couple years of dialysis and a later transplant and some wonderful medical treatments by a wonderful medical facility and their human teams at Tampa General Hospital and Lifelink of Tampa and after three years we were again able to continue with a nearly normal life. We enjoyed a little travel, normal diet, and the ability to stay out of hospitals for a couple of years. We also made sure we did our exercises, stayed on a strict regiment for medications, and did the smart things to keep healthy. Life was pretty good.
Then just a few weeks before Thanksgiving in 2011, while taking our daily walk over the Ringling Causeway Bridge (one of two hills in Sarasota county-the other being the landfill), my wife complains of having a sore shoulder. She guessed it was from matting a picture the week before and she schedules an appointment with the family doctor. This visit results in a prescribed massage to work the muscles of the arm and shoulder. This doesn't work as the pain intensifies. Nor does a second massage provide any relief. In fact, by the week of Thanksgiving the pain has intensified to the point where breathing had become difficult. This prompted a call to our Pulmonary Doctor and she ordered an x-ray of the chest that further indicated the presence of fluid between the left lung and the lung field. On the first of December (Friday) we reported to the out-patient clinic at the hospital to have the fluid drained and afterwards we were excited about getting Christmas underway. The drain was simple but surprising because they took over two liters of fluid and this had collapsed the lung explaining the difficulty in breathing. All was well and we even went out the next morning to do a little shopping for the holiday. We barely made it inside the store when she asked to be taken back to the car, more pain in the shoulders. By Monday morning we knew a trip to the Emergency Room was in order.
After x-rays (showing the return of more fluid) and other preliminary tests we were visited by our Pulmonary Doctor and she gave us the news, "I am afraid there is evidence of Non Small Cell Cancer in the diagnosis of the fluid that had been removed. It appears you have lung cancer." This was the very instant when my Companion Cancer surfaced. We looked at each other, held hands, tears welled up in our eyes, but we were veterans and knew there would be more tests required before we would allow ourselves to panic over this announcement. True to the nature of this wonderful woman I have shared a life with, she immediately after hearing the initial diagnosis, apologized to me for getting sick again.
As previously mentioned, I am going to speak in terms of MY disease and not hers. First there was the old fear that immediately gripped my stomach, the same fear induced stomach pain I felt back in the days of the Scleroderma crisis and the loss of the kidneys and the years of dialysis and then the transplant. This is a terrible feeling and TUMS don't work. I am a big kid and have learned a lot about the medical profession over the past several years and my initial understanding of what is going on is pretty comprehensive and leads me to make some very stark conclusions of what is in front of us. This doesn't help the stomach.
Next we are visited by the Oncologist, a nice guy with a name impossible to pronounce, and he comes in to explain what is next in the form of testing and diagnosis. Again I am not getting a good feeling with all of this. He asks the big question, "Are you now or have you been a smoker?" The answer is, "Yes."
The cause:
My wife had been a smoker for the better part of thirty years. We both smoked when we met but I kicked the habit a couple of years later and try as I might, and as she might, the forced addiction to cigarettes was overwhelming to her. She simply could not kick the habit and for more reasons besides she did not have the control to do so. Understand that the tobacco companies do a lot of things to make cigarette smoking an addiction and to keep it this way.
OK, for thirty years she smokes Benson & Hedges which is a product of Philip Morris Corporation, an Altria Company. As stated, many times she had tried to quit but the draw to this product is just too much and it wasn't until she was diagnosed with COPD in 2000 that she finally quit smoking. At this time she is put on a daily breathing medication (two in fact) and needed them. What is known about lung cancer is ninety percent (90%) of all lung cancer is caused by the use of tobacco products and a share of the remaining ten percent is caused by second hand smoke.
A little bit here about the tobacco producers and what is known about them. Let me point out a couple of items these people put into the tobacco. Alphabetically, first is ammonia, we know it as a common household cleaner. I wondered why ammonia? There is a simple explanation for this. Ammonia has chemical properties that tend to open the pores of the lungs so the vaporized nicotine can be absorbed faster, thus the stimuli to the brain from the inhaled smoke acts faster. Then there is Angelica Root Extract, not as angelic as one might think by its name since it is known to cause cancer in laboratory rats, Arsenic, no details needed here, and next is Butane. Why Butane? So you can keep the fire at the tip of the cigarette at a constant high temperature. Goodness knows they don’t want their customers lighting up over and over again.
Next we find Cyanide, DDT, and also ethyl furoate for the liver. Lead to stimulate the brain, and then there is formaldehyde, I guess to start the embalming process early. Here is a good one megastigmatrienone, one of the ingredients in grapefruit juice. Are they concerned about our vitamin C level? Moving on, there is maltitol. This is a sweetener for diabetics and next we find naphthalene or in other words mothballs. Here is one you can really relate to, methyl isoryanate, this is the stuff responsible for killing thousands in Bhopal India back in the eighties when a cloud of it escaped. And last but not least on my short list there is polonium. This is a known cancer causing substance and it is radioactive to boot. I guess this will let their victims glow in their caskets.
I understand, from my research of other’s research, there are several hundred toxic items introduced (or allowed) by the tobacco industry into tobacco products. I bet it really irritated the tobacco producers when they had to make full disclosures during the impotent tobacco trials in the eighties. You should review the list of human killing ingredients as it is very interesting. I am particularly irritated by all of the additives they use to ensure dependence on their products. In other words they enforce addiction.
So, with this understood it kind of makes me understand the people who profit by selling this poison are kind of like the terrorists who strap on bomb vests and walk into a crowd of innocent people and detonate the bomb indiscriminately killing those around. The only difference I can see between the two is the bomber, as horrible as this line of thinking is, is doing their deed for a cause and the tobacco producers are doing it for money. I am sure in their defense they will tell us Dow Chemical produces a lot of the same poisons and toxins but there is a huge difference here. Dow Chemical does not produce their toxic products for human consumption.
As I now see it, my Companion Cancer is a result of some people who want to make a buck! I go to the Philip Morris Home Page on the internet and they boast of their four mission strategies as being:
1. INVEST IN LEADERSHIP: This means they will only hire those who won't allow the killing of innocents to be a detriment to the company goals.
2. ALIGN WITH SOCIETY: They explain this one further as they will, "actively participate in resolving societal concerns that are relevant to our business". They are actually saying they will meet the social challenges of them killing people for gain and excuse their part in the killings.
3. SATISFY ADULT CONSUMERS. Now isn't this what Dr. Jack Kevorkian was doing?
4. CREATE SUBSTANTIAL VALUE for SHAREHOLDERS. Make money regardless of the residue!
I researched their site a little more and they are extremely proud of their position in the business world and have listed a 'Responsibility Pledge' that states; "There are those who believe that a company that makes a dangerous and addictive product cannot be responsible. We believe that responsibility is defined not only by the products a company makes, but also the actions it takes." And the actions they take continue to kill people!
Granted, it is not totally their fault my wife died this horrible death. They were not there to light the cigarettes and blaming them could be construed by their attorneys as the same as blaming Smith and Wesson if my wife had died at the hands of a gunman during a robbery. But that theory won't change my mind on their shared liability. Maybe I will pass this document on to a prominent legal firm and see if they want to start a class action suit on the behalf of those of us suffering from Companion Cancer. The people making and distributing this poison only understand pain in the wallet and they have not suffered enough pain as yet. I base this on the understanding they are still killing lots of people.
The symptoms:
Hang on here folks because 'this ain't gonna be pretty!' My only problem in this area is, 'where to start'? I guess I will recall the sequence of events from the previous point on so you will know what to expect for yourself or for a loved one.
We are admitted to the hospital and we find a bed in the Oncology Ward (Cancer Ward). Not a comforting place to be as many of the people here are not going home and the others are so sick they kind of walk around (the ones who can walk) like the people in the old black and white movie, The Night of the Living Dead. We, my wife and I, look at each other and knowing what we had been through before and thus, we share the understanding this was not desirable.
She is still in a lot of pain because of the half gallon of new fluid between her left lung and the lung wall and the newly and repeated collapsed lung. But they need to do tests before they can do the surgery to place a drain in her chest cavity for the fluid problem. The next morning she gets a CAT scan and some other testing and in the evening the Oncologist reappears and tells us there appears to be masses inside and outside the lungs and there are masses on the Adrenal glands. He is specific about the Adrenal masses as being five centimeters in size. (He mentioned the size of the Adrenal mass as being five centimeters three or four times and when I got home late that night I researched this and the five centimeter standard means this is highly advanced and most likely not curable but possibly treatable).
Dr. T. informs us that tomorrow we get to talk to the Cardio-Thoracic Surgeon and he will explain the options for placing drains in the chest, and Dr. S. is a great guy. He explains three options with the third being a drain catheter that is permanent and is placed so the patient can go home and enjoy the remainder of their life without being in an institution. He suggests the third method. Dr. T. wants the one that is placed for a short time and then a sticky goo is sprayed on the outside of the lungs and the lung field with the hopes the lung when inflated will stick to the lining of the lung field and thus deny this gushing fluid a place to go.
The first option drain is placed requiring us to spend three more days in the hospital as they measure the output and hope this 'super gluing' method works.
OOPS! I forgot to mention that Dr. T. and Dr. S. conspire for some exploratory by Dr. S. to see what it looks like in there and he comes out after the surgery to explain the success of the placement of the drain and the lack of success in finding a normal looking chest cavity. "Ed, I found a number of tumors on the outside of the lungs, the lower lobe of the left lung is mostly dysfunctional because of deterioration and there are more tumors on the lung field lining. I am afraid this makes it a stage four cancer." He then tries to make this less frightening by telling me, "However, there are two steps to stage four and that is "A" and "B" and since it has not metastasized I would place this as a stage "A".
I countered, "I thought there were masses on the Adrenals?"
He answered, "I forgot about that. It is a stage four "B" cancer".
This next symptom has me walking around the hospital grounds during the two hours it takes for surgical recovery and this time they move us to a nice room in the cardiac section of the hospital. She cannot sleep lying down so they bring in a special chair for her to sit in and it conveniently has a hanger for the drain bag. So we spend three days draining and waiting for the dreaded pathology reports that will dictate out fate.
At this point my Companion Cancer has me frightened more than I have ever been in my life. I am also frustrated as she is in constant pain because the fluid and the drain is causing pressure on one or more of the thoracic nerves causing the pain to be radiated to other parts of her body and there isn't a damned thing I can do about it other than beg for more and stronger pain meds from the nursing staff.
We are released from the hospital on Saturday just hours after they pull the drain tube and suture the opening closed. By now she is so weak I have to support her for any walking. I am filled with the horror of her rapid demise. (I told you I was going to be selfish and speak to my Companion Cancer symptoms).
We spend the rest of Saturday and Sunday doing a little decorating in the house for the upcoming holidays. Not much as she is in severe pain as the fluid volume is building. By Monday morning we are back in the Emergency Room. She has filled back up and the pain is just about unbearable (for both of us). Dr. T and Dr. S. both visit and the decision is to go to drain option three. Surgery places the drain and I view the video on how to conduct a thoracic drain. We spend a couple more days in the hospital and come home and we are on our own.
Hey, if you have never done a thoracic drain the procedure is pretty neat. There is a vacuum bottle and you connect it to the catheter plug that is hanging out of her chest and the inside part runs along between the lung and the lung field lining. The tube causes a lot of irritation and this does not go away because if you think about it you have this plastic tube in a place where plastic tubes are not normally there. If you get lung cancer you can expect to have this procedure on you before the end and your loved one, the one suffering from Companion Cancer, will have to do the drain. You will be too weak and sick to do it. You will also have the option for a home nurse to visit if your insurance allows this or you have a lot of extra money. I choose to do it myself because I love her this much and don't want a stranger doing this and it gives me some relief thinking I am at least helping. The drain takes up to half an hour and the first time I got 900 CC or just about a quart. The difference for my wife was like night and day as the fluid was drained and some of the pain left her for a short time, that is until the fluid began building up again. During the drains, and because of her deteriorated condition, I have to support her in the chair and eventually because I can't do both the drain in a sterile manner (a must!) and hold her sitting up we do the drains while she is lying down in bed. My Companion Cancer really hurts during these procedures because I have to look at the person I most love and watch her go through this humiliating experience.
We go to Lifelink of Tampa, the great outfit who did the kidney transplant and the doctor is compassionate and decides the best course at this time is to discontinue the immunosuppressants required to keep the body from rejecting the transplant because she is going to need what is left of her immune system, plus whatever strength gained by stopping the meds will provide, to survive any possible chemotherapy treatments. "What about losing the kidney?" Dr. J. (one of many great doctors at Lifelink) replied, "This is about your life not your kidney." We have a follow-up meeting scheduled for the day after the Oncologist visit the next week so they can see what the effect of removing the immunosuppressants might have been.
We return to the Oncologist, Dr. T., a week before Christmas for the verdict. Pam is now so weak I have to utilize one of their wheel chairs to get up to the offices and being a new office patient we have to go through all of the history, meds, and other stuff they need. Dr. T. comes in the room and tells us he does not have the final report from the pathology labs so he cannot give us any information at this time as to the type and treatment options. He schedules a PET scan (A look from neck to knees to see where the cancer has spread to) for the next day and another appointment after Christmas. See ya then. I truly believe he was being nice to us and telling us to go and enjoy Christmas and the visit from our son and his girlfriend and he will pronounce sentence after Christmas. Nice guy and we both liked him even if he is fibbing a little! Lifelink decides to wait until after for the next appointment with the Oncologist.
Her condition exponentially grows worse and we have a 'little Christmas' before the big day because our son must return to Yankee Land. We cancel the family thing with my sister and her husband coming for Christmas because of our conditions. Hers is understood and mine is from the osmosis effects from her many conditions. Let me tell you Companion Cancer is hell.
We return to Dr. T. to get the latest from the 'completed' pathology tests and the PET scan. This meeting does not go well as they cannot get a blood pressure reading or enough of a pulse to record the rate. Dr. T. is very fidgety when he comes in and examines her. Fidgety in a doctor, especially one who specializes in a single area, is not a good sign. I look into his eyes and see his fear. Not the fear that I am feeling constantly but the fear he is feeling because he knows he is not going to be very effective in this case. He hurries through the remainder of our visit and states he wants the doctor at Lifelink to call him during our visit as he must come to an agreement with them before he will start any possible treatment. He doesn't give us any further details other than if all agree we will start chemo in the day following our visit to Lifelink (if there is agreement). We leave not knowing the results of the PET scan or the final pathology report which I now understand as being premeditated by Dr. T. His omission of the additional information is because he has some news he doesn't want to hit us with at this time.
I do my research and come to understand the success of treatment for her condition is very low and added to the down spiral of her condition and her lack of an immune system the 'low' slides down the scale. I resign myself to the understanding tomorrow is going to be the 'death sentence'. This is one of the new symptoms that surfaces, 'hopelessness'. I am normally a very positive person but companion cancer has stripped me of this ability at the moment.
Our trip to Lifelink is not enjoyable. For five years we have been monthly visitors to this facility and almost every visit was a joy because of the wonderful and caring staff of Lifelink and the even better treatment. This time I have to leave her in the car and go up to the fourth floor to get a chair and return to the car and literally lift her out of the car and put her into the chair, set up her oxygen again, and wheel her to the floor. T. A., our dear friend and study nurse and also our angel, who has been with us providing care and love since the day of transplant, meets us at the elevator and we speed through the registration process and go directly to the lab. They can't get a single full vial of blood to do blood work and the blood pressure is way below the dangerous point. The Lifelink staffers, people we have been with for five years, are all downcast because they all know and love this great lady.
We are led to an examination room and in a few minutes I am summoned and go meet with Dr. J. who has just conferred with Dr. T. There will be no treatments. Dr. J asks if I would like to take my wife across to TGH for admittance to check to make sure nothing else was going on. I ask, "If I don't subject her to another hospital stay we have maybe a week and if we go over there for a couple of days we will have maybe a week and a couple of days?" He agrees with my assessment and I declare I am going to take her home. "No more hospitals!" He again agrees.
Lifelink notifies Hospice as we leave and return home to await the end. Hospice sends out a squad of people and they do a great job helping us through the final days.
More Symptoms:
One symptom you may never think about, nor is it written about, Diarrhea. You don't get it you get to clean up from it. May I suggest; Depends, bed pads, Tuff Stuff (sold at WalMart and does a great but incomplete job on the carpets.) along with rubber gloves and lots of love. This is real difficult for both because this is something that can sap the pride out of a normal person. When that someone is sick and bewildered and in pain, it is mostly intolerable.
Pusher! This is what you will become when you have companion cancer. You provide the narcotics to your loved one! You start with the mild narcotics, such as Hydrocodone, and this is a tablet that administers to pain. (I lied when the Doctor asked what dosage we were using which was 7.5/350 and told him we needed 10/500) You have a set schedule when this is allowed but sometimes you have to cheat. Next you graduate to Morphine. First is the layered tablet that puts the pain medicine into the system over a period of time. Again you try to stay on schedule but you do cheat. Then, as the health continues to deteriorate and she cannot swallow a pill anymore you are elevated to the liquid form of morphine and an eye dropper. This is placed between the teeth and cheek and you squeeze in ten mils. They say when you take these narcotics when you are truly in pain you do not become an addict but I think differently. Let me caution you here because when the end is very near there is usually mucus in the mouth so you have to be very careful to get the medicine to the cheek area so absorption can take place for the benefit of pain control. (Note: This is the same problem my mother had-she died of cancer also. "Winston tastes good-like a cigarette should". But not my father-no cancer for him-he died of emphysema, "Springtime-it happens every Salem".)
Loss of appetite: For some reason you forget to eat. I guess this is driven by your loved one because when they are near the end they no longer have an appetite and as previously mentioned they cannot swallow and they also fear if they eat anything they will immediately reject it in one of two methods. When you do eat, it is usually junk food and it burns the hell out of your stomach.
Lack of sleep: you try to sleep but your loved one has an irregular schedule so you have to change your habits to their needs. This is rather difficult but somehow love overcomes any frustrations you may have from this side effect.
Panic: There are so many times you experience mild to complete panic. Times when you are sitting there holding hands and her grip goes away and you come out of your trance because you think this is the end. Times when she is 'space gazing' and you cannot get her attention and again you are convinced the end has come. And of course, when the end does come you experience the real thing!
Anger: You are not in control of the selection process and can't figure out who or what is. You are mad but you don't know who you are mad at. It is maddening and I know that in my case I would have traded places with her in an instant.
Loneliness: Even before the final event you become very lonely. Here is someone you have been with for a lifetime and you are about to lose them. I can attest this symptom is going to be around for a while.
Enough is enough! I could go on with the details of a lot more symptoms and what will be required of you as a care giver or your caregivers close to and after the end but I think I have made my point. And the point is: You body is not a proprietary item owned exclusively by you. You begin sharing your body and your health the instant you are born. From the doctor who delivers you, the nurse who cleans you and bundles you and hands you over to your mother, they all share you. The first time and every time you make love you are sharing your body with someone you love. Your siblings, your parents, friends, spouse, grandchildren and anyone you can think of that you share time and love with, they have a claim to you and your body. When you choose to take on a deadly habit that will result in a condition such as lung cancer you are not just creating a dangerous situation for yourself but all of those others who do have a legitimate claim to your body.
I loved my wife very much and still do. Death has not stopped this love and I doubt if time will have an effect on my love for her. I would not take back one second of the care I gave her and would only try to increase the effort if I had a second chance. I miss her greatly and will continue to honor her memory with my memories. We cannot change anything when death happens all we can do is deal with it.
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