Failure tastes like vomit

Having cancer in the esophagus causes me to vomit every day at least once and too many days I vomit repeatedly.

The daily vomit is foam. Foam builds up in my stomach, either from the chemotherapy or from having a tube inserted in my stomach. It is not like vomit that I have purged out of myself before. It is foam, like soap bubbles. I usually have to vomit this up after my day is done, near bed time. Some days I am spared but then the next day I vomit up a double dose.

The excessive vomiting from the tumor will happen when I eat something, or drink something. In the beginning there were things I could get away with eating or drinking but as time went on all food and liquid is being rejected. This vomit is not acidic but it contains whatever was ingested. When I am lucky, it will be a single vomit but when I am not lucky it will spiral down into vomiting every sixty or thirty minutes. The only way to stop this kind of vomiting is to sleep it off for at least four hours. It has happened to me often enough that I know nothing else will stop the dry heaving. Even though there is nothing in my stomach, the nausea becomes unbearable and leaves me dry heaving.

Tuesday night I returned to work. After less than three hours, I was in the bathroom vomiting. I blamed myself for having sucked on a second piece of hard candy. I had planned to suck on one an hour and the second piece caused the nausea. The air is dry where I work and full of paper dust, as well as other dirt. I work in a factory environment. I work the overnight shift and my night of hell started around midnight and I did not stop dry heaving until noon the following day. My work partner for the night on the machine had to cover for me ten minutes or so every hour or thirty minutes as I went to the bathroom and dry heaved.

Wednesday night my goal was not to vomit. I failed. It turns out that the candy was not to blame after all. It is the work I do. Bending and lifting aggravates the feeding tube or how the tube is attached to the inside of my stomach. My boss suggested, strongly, that I leave for the night when someone told him I was in the bathroom heaving. I did not argue. I can not physically do my job until the tube gets removed and I have no clue as to when that will be. Many months from now, I am guessing.

Baffled by the Biology

Why my body is doing what it is doing has baffled me from the beginning of my battle with adenocarcinoma and my dozen of doctors have been unable to figure out why I have some of the symptoms that I have as well.

I have a tumor in my esophagus. Why does that tumor cause me to vomit? I do not gag while trying to put anything into my stomach, which the doctors expect. The food reaches my stomach and I start to have an allergic reaction to it until I finally purge it back out. My stomach also started doing this with only some food and not others, and it was not because of the size of the food. If the purging reaction was caused by the tumor somehow being aggravated when food passes past it, then it should not have been able to tolerate big bites of some food and not others. At the present all food and water causes me to purge it back out. My fear is that once I am done beating cancer I will still have the stomach problem to solve. It has gotten worse while the tumor has not grown. I still do not gag while swallowing.

Now I put food and fluids into my body through a tube that goes through my abdomen and directly into my stomach. A hole was punched through my abdomen and I am curious why the hole does not heal around the tube. The doctors do not seem concerned about this and assure me that the hole has sealed around the lining of my stomach. If that hole is healed up inside of me then why do my stomach contents leak back up out of the hole? No one can explain this to me. They come out of the hole, not the tube. After not leaking for a month, it started leaking. The fluid not only leaked but poured out of me if I crunched my stomach muscles. My doctor was baffled by this and suggested that I wear a colostomy bag to catch the fluid. The doctor also thought that stitching up the base of the tube to my stomach might help and told me to go back to see a different doctor to have that done. I left his office that day wondering this doctor who inserted the tube would not stitch the base? If he thought today that the base should be stitched why did he not do it when he put it in, three different times because I needed to have the first two tubes replaced?

The colostomy bag is smaller than I thought it would be. Nine inches. I guess that the bags for capturing fecal matter must be bigger because this bag would barely capture a single one of my turds. I very much doubted that the bag was going to be any help and I am happy to admit that I was wrong. Wrong, but confused. For whatever reason wearing the bag has stopped the leaking. How this is happening is a mystery. The base of the bag does not cover the hole and the base of the tube is loose under the base of the bag. It should still be leaking but the bag has been nearly empty the past three days. Going into day four, it appears that this bag has worked some kind of miracle. Now I have no need to stitch the base into my skin. I wonder if letting the tube hang down instead of taping it horizontal to the hole is the cure for the leaking. If that is true, why was I instructed to tape the tube to myself that way? I wonder also how long doctors have been inserting tubes into people and if I am a guinea pig for a new technique.

Soon to be forgotten but not gone yet

Get cancer, drain your savings account because you can not work, become homeless because you can not pay your bills. This is the path that society has prepared for us.

You can also lose all relationships that you have with friends by being the “SICK” person and cause your family to view you as nothing but a burden. The family is better off without you dragging them down. In my case, my “Sweetheart” of a wife has no problem vocalizing this feeling on a daily basis.

I “Googled” how to avoid having this happen and there are no answers. There are plenty of advertisements for companies willing to lend me money and take advantage of my illness. Not surprising at all. The internet is full of horror stories detailing how cancer destroyed people’s lives financially, in addition to the sickness.

Once I am completely broke, I can get crappy medical treatment that society provides for the unwanted. If I survive the cancer is when I start to rebuild my broken life.

Pissa

My hole is leaking. How disgusting those that sound, no matter which hole I am referring to?

The hole is the hole that the doctor punched into my abdomen to install a feeding tube directly into my stomach. The tube leaked when it got infected about a week after it was installed but this time it does not look infected, at least from the outside. If it was infected where the tube meets my stomach on the inside of me, I would think that there would be some infected looking fluid coming out but I see none of it.

Friday night was when the tube started leaking again and of course my doctor is off on the weekend and I will have to make an appointment for a day this week, which means another delay in my return to work. At this point, all I can do is imagine that God has some reason for keeping my away from that job. Maybe something bad was going to happen to me at the job. Something worse than the usual nonsense that happens to me at my job

When I say the tube is leaking you have to imagine a stream of fluid coming out of the center of my body. This fluid, which is the contents of my stomach and acidic, pours out of my stomach when I crunch my abdominal muscles. I have been having two or three episodes per night and I release about nine ounces of fluid. I was told that the acid is not ruining my internal organs because this part of my body is similar to a chicken breast and the fluid only goes through the hole. The acid does burn the skin around my hole. I am curious as to why the hole does not heal around the tube. I am curious about many things that are happening during my fight with cancer.

 

 

Me versus Adeno

The fight for my life has not been glorious and has involved way too much “Toilet Time” for me to feel like a Viking. Still, if you know me then you know I have never doubted that if the odds of winning are 20% I am one of the ones who will win. I have never lost my will to live while kneeling or sitting on the toilet. Mostly kneeling in front of a toilet.

The nearly constant vomiting might be a condition particular to the type of cancer that I have and maybe some bad luck for me in where the tumor is. It was around this time last year that this battle began with certain foods, like bread, triggered an allergic reaction that would only end when I vomited up what was offending my stomach. Most foods were accepted by my stomach but it started with bread. I thought my stomach might be going through a mid-life crisis. I had heard about such things like that from old people. The body changes in unexpected ways. Maybe this was what was happening to me? Developing food allergies in my middle age?  While I was trying to learn what I could eat and what I could not, while my stomach kept adding new things to reject to the list, I cracked a tooth and it got infected before I could find a dentist willing to remove it instead of trying to “Save” the tooth. That took four months and distracted me from going to my doctor about my newly insane stomach.

When I finally went to my doctor on my first day off from work of 2018 he was as confused as I was. Thinking that it could be “Celiac” disease I was sent to take the test for that which was to inhale something out of a paper bag. Whatever was in that bag got my tumor so angry that I was vomiting and dry heaving for almost a week afterwards. I do not have “Celiac” so the next test was to have my stomach looked at through a scope shoved down my throat. That doctor was the one who discovered the tumor and told me straight away, it is not a good tumor to have. I still did not know it was a STAGE 3 tumor yet, but I knew I had cancer. The STAGE 3 news did not hit me like a belly punch until over a month later. My insurance company and medical receptionists who are not happy to be medical receptionists all caused delays in my getting treatment that lasted until the beginning of March. Most of February was spent playing phone tag with people and getting “Consultations” instead of treatment. All this time, I was still vomiting and removing foods from my diet.

I lost 70 pounds, dropping from 220 to 150 in the year since I started fighting cancer. I did not really LOSE the weight, I threw it up. I was told that the tumor also burns up half of the calories that I consume, so it also took part in shrinking me. At 150 pounds I look like a prison labor death camp survivor. I also lost my beard, as a result of the chemotherapy. I shave my head, so I do not know how much hair I would have lost. I still have my mustache and my 2 “Hair Horns” that I started growing last Spring, but they have shrunk. Cancer has made me look sick and old. I need to buy T Shirts that tell everyone I am fighting Cancer so that they do not think I have something contagious.

The solution to stop the vomiting was that I now eat all of my meals through a tube that was surgically jammed through my abdomen into my stomach. I can not tolerate any food, or drink even, passing my tumor through my esophagus. The casual way my doctor told me he was going to do this to me nearly knocked me out of my chair. This one doctor is comically like a mad scientist. He always seems to have a million things on his mind and whenever I tell him anything like I am vomiting my brains out he replies that he was expecting that. He never tells me what he expects, but I will guess this is because there are so many horrible things that can happen it is not a good idea to tell me all of them because not all of them will happen to me.

The TUBE operation was way more complicated than they made it sound. It took me a week to recover from the surgery and then the hole got infected, which required the tube to be removed and replaced. The second tube came out of my body in my hands while I was taking the dressing off on the first night after the surgery, so I had to have a third quick operation to put another tube in. The TUBE food also gave me a bad case of diarrhea. This went on for a few weeks before one of the doctors told me to dilute the food, which worked. I wish I had been told that in the beginning. I was told to put the food in as is, so it was not as if I was not following instructions as I was poisoning myself.

The chemotherapy has not been bad. I had to have a PORT surgically implanted into my left sternum where they plug the chemotherapy tubes in. If I was not vomiting the entire time that I was there, the chemotherapy session would be much more pleasant. I just sit in a chair and let the chemicals drip into my body, stunting the growth of the tumor and causing it to eat itself because my body produces no new cells for it to consume. At least, that it what they tell me is happening. I do not know that the tumor is shrinking because I still can not use my esophagus.

That is the plan. Shrink the tumor, cut it out and pull my esophagus up as far as the space that the tumor left. The tumor did not spread through the esophagus, which is great news. After the tumor is gone, I can get rid of the tube and I have a long list of foods that I plan to eat.

Adeno

Ten people go into a room and only two people are going to come out.

I did not walk into the room voluntarily. None of us did. I am not sure how friendly I want to be with anyone else in the room because we entered as strangers and I already know eight of these people are not coming out. I already know enough dead people. The cost I will pay for not getting to know the other people is that I might miss the chance to learn something from any of them that might help me be one of the two to survive. There also could be some kind of a miracle and we all beat the percentages of survival that we were given upon entry. That survival percentage is for just 5 years. After reaching the 5 year exit door, I will be in another room and will learn what the survival rate is when I get to that point. For now, I am going to focus my fight on this room.

We are not fighting against each other. We are all fighting a common enemy. Cancer.  Specifically, adenocarcinoma. Cancer in the esophagus.

It might be helpful to speak to people who have beaten this, but every one of us has our own struggle with our own variables. Where the cancer is and how far it has spread. What physical condition we entered into the fight with.

Odds are 20% for victory. I should be dead already, so many different times and from so many different ways, that I fully expect to survive this too. I will also help anyone else in the room with me if I can, but I do not anticipate that I will be able to. We are all on our own.

The Dream

I often have this recurring dream

You are gone

I am in a big empty house

I am waiting for you to come home

 

The house has many empty rooms

Everyone is gone

All I can do is wait

You never come home

I am forever alone

**

One morning I woke and found you

Sitting at our kitchen table

Looking like you were grieving

I asked you what was wrong

You told me you were leaving

Xmas 1965 (?)

I was too young when this happened to remember the incident but the story was told repeatedly for years and years afterwards.

My family was at the home of someone else when “Young Me” received a gift called the “Horrible Hamilton” toy. It was a toy that when the string was pulled, the arms and legs would move and it would crawl along the floor. Young Me had a different idea of what it could do and I tossed Hamilton into the Christmas tree. Hamilton tore the tree apart, sending Christmas ornaments shattering to the ground with its robotic motion as the adults in the room yelled in shock. I was only about 3 or 4 years old, so I do not think I meant to create the chaos but was just curious if it could climb a tree. OR, I could have been surprised when it started moving and just tossed it away and the tree had the misfortune of being in the direction I was facing. Whatever. It became one of the Classic Christmas stories for our family.

I found Hamilton on Youtube. I never saw the toy again so at least now I know what it  looked like.

Thanks “Boss”

What am I doing for the Thanksgiving holiday? I will be following the traditional Thanksgiving meal that I have repeated nearly every year for about 20 years now. I will be having a turkey sandwich from Dunkin Donuts. I have to work that night.

My overnight shift starts Thursday night, which my job considers as the beginning of Friday. This completely ruins the Thanksgiving holiday for me. My job gives me off the night before, Wednesday. It considers Wednesday as the “Holiday”.

It gets worse. If I was one of the lucky few who were able to get the holiday week off, our work week starts on Friday night for Saturday. No one is starting to celebrate Thanksgiving on the Friday before Thanksgiving, 6 days in advance. We would all want to be off Thursday, Friday, Saturday and Sunday so that we could visit our relatives like a “Normal” person does. I suppose my co-workers who were lucky enough to get the “Holiday” off this year could be the hosts and have everyone come visit them and then they could send them all home so they could sleep Friday and work Friday night. One year I did take off 2 weeks so that I could have the “TRUE” holiday weekend. I had to use 10 days of vacation time when I only needed 4 of them. You would think that my job would make an exception to there “WEEK” rule for this one week of the year, but not my job. Everything is “By the Book”

I still have many things to be thankful for and I will celebrate them, alone with my sandwich from Dunkin Donuts.