Cancer patient care and creative writing.

“A writer finds time to write, no matter what.”
— Every writer

Three things reign over my life for the past three years and they are cancer, patient care and creative writing. Sadly, the one named Cancer has ruled them all and in the darkness bound them. As a writer, I do not get much time to actually write but there are other elements to being a writer. Some authors will say, "A writer must write everyday."  "A writer finds time to write, no matter what." These statements are simplistic and only apply to cases of relative stability. Many of us who write have inexorable circumstances that prevent writing everyday or making time. This does not mean I am not engaged in the creative process or developing skills. Living and encountering the turmoil of this fragile existence is just as productive if done with awareness and examination. First, "my why I cannot make time everyday to sit down in front of the computer and hammer out prose or non-fiction." Today is an exception due to issues I will not discuss.      

The doorbell, coming from the bathroom, sends a round thud down the hall as I try to fold laundry and hold on to a semblance of cleanliness. Mind you, the doorbell is not from the outside. It is an inside doorbell. A remote control doorbell. The portable alarm/speaker box, plugged into the wall above a cluttered vanity, gets funneled through the hallway that acts as an echo chamber. The actual doorbell to the front door doesn't even work.

The Bing Bong...Bing Bong...Bing Bong tells me my mother needs my help with one of many tasks or that she wants me to make a note or look at something she found online. You see, she cannot speak. After three recent cancer surgeries, two oral and one lung, the last muttering she could muster are now gone along with her larynx. This interruption of activity that comes without warning at anytime of the day or night, anytime, has made me hate doorbells even more than the "emergency" cowbell my mom has by her side for really bad things you don't want to know about. 

Let's just go down a list of things that need to be done for her to survive during the day, but first, an overview of my mother's condition. In 2001, she had stage four oral cancer that spread to her lymph node on the left side of her neck. Oral Surgery (and a rather gruesome looking neck to armpit surgery) and radiation gave her a respite from the dread disease but numerous disabilities had accrued such as the radiation shrinking her esophagus made it very hard for her to swallow food. She choked a lot, like every day, and her days of going out to eat were gone. Then, in 2012, she was diagnosed with more squamous cell carcinoma on her tongue. For this, they did a hemi-glossectomy (cut out half of your tongue) and they thought the margins were clear. Nope. And you should know, my mother's ability to speak from the 2001 surgery was greatly compromised and now it was bordering on a series of gurgles and guttural evocations. Plus, she now could not swallow food very well. This also meant swallowing pills to keep her alive was chore that could take hours as sometimes pills would get stuck in her throat and she no longer had the swallowing power.

Sorry, I forgot my mother had a liver transplant in 1998 and she had to take immuno-suppressant drugs to keep her liver from rejection. The big issue with having a suppressed immune system is you get sick a lot and the immune system doesn't do it's normal duties like clearing out senescent cells or destroying cancer. As an example, back in the 1980's some men with Acquired Immune Deficiency Syndrome would get Kaposi's Sarcoma, a skin cancer normally found in elderly men from the Mediterranean countries. One reason why older people get cancer more frequently is that their immune system breaks down as they age as seen with shrinking thymus gland that produce white blood cells called T-Cells, or T-Lymphocytes. So, the cancer with my mom was not unexpected.   

The oral cancer came back in 2013 where they did a small surgery on her lower jaw and implanted radioactive seeds. Yes, seeds, metal seeds, buried in the flesh of the mandible. But that would not be enough, another lesion occurred in 2014 and they had to remove almost all her remaining teeth. Oh, I forgot, they extracted sets of teeth as this went on. It's a disfiguring experience. 

Then the big time showed up, 2015. Two oral cancer surgeries including removing every bit of the remaining tongue and her larynx. Also, she had lung cancer. This was not even the same type of cancer. It was non-small cell adenocarcinoma. This was found by accident when they did a chest x-ray leading up to her first oral surgery during a process called pre-admissions testing. Yes, surgery. And now, chemotherapy. Rounds and rounds of it for both the oral cancer and the lung cancer. This would mean eating would be problematic, but in an instance of luck, she had a a g-tube/feeding tube implanted after the oral surgery in 2013. Another factor was the laryngectomy, as this meant she would be fitted with a permanent tracheostomy. Yes, she breathes through a tube in her neck and eats through a tube that goes through her tummy. Won't get into all the bone and skin grafts of the reconstruction surgeries, but there were  many. Most importantly, she has another tumor that is currently being treated with chemotherapy so to shrink it enough to be removed. More on that at the end.  

I will go into all this in great detail in a memoir about the experiences and my attempts to be a productive member of Wayward Raven Media. The fun, whimsical stuff like going to cons will make up the majority of the memoir along with trying to teach people how to engage comic book fans. Almost done with by the way. Not sure about publication plans.

How about a photo of drugs. 

1) Drugs

About thirty minutes to complete each session. Three sessions a day

2) Food

food is pressed through a syringe and takes about twenty five minutes to complete but done five times a day and spread out. 

Must do at least four a day and she can only do one at a time because her stomach has shrunk. She must wait at least a few hours between feedings so she doesn't regurgitate and we need to get the suction machine.


3) Flush with more water.

My mother takes in water with a large syringe that connects to the g-tube. This must be done after feedings to flush the insert tube and also to hydrate. Taking in water on its own happens about four times a day.    

4) Humidifier mask

(pictured above with the suction machine)

Three or four times a day at fifteen minutes a pop.  Right now air goes right into her lungs and is not humidified by nasal passage or throat. Dry lungs can lead to dry muscus plugs that make you die from blocking the treachea. This can lead to choking to death if a blockage occurs.

5) Clean mouth help.

Rinse and brush two remaining teeth. twice a day. Twenty minutes or so each time.

6) Nebulizer. If need be.

This a vaporizing machine that pumps air through a nozzle filled with albuterol. This drug  allows her lungs to open. It's basically adreneline in mist form. 


7) Exercise

Minor exercise of getting up out of recliner.

8) Pain meds.

As need be. Sometimes a few times a day and sometimes not at all.

9) Cleaning

Tracheostomy/neck tube gets cleaned out two to three times a day. Getting out the mucus with hot water, sponge brushes for teeth (individually wrapped)  and using hydrogen peroxide to sterilize. 


10) Eye bubbles.

Get her to wear eye bubble for sleep because her seventh cranial nerve is paralyzed by the current tumor. Eye bubbles are eye patches with a transparent dome.

11) More Drugs

Drugs for sleep and anxiety.

All this is the "must do" list and must be spread out over the day. It takes a long time and there is the housework and laundry. Cleaning is a constant. I dust everyday even with the three air filters running her breath goes directly into her lungs. No nose or mouth to filter particles. Her immune system is even more limited than before with the chemotherapy so toilet and hard surfaces she touches must be cleaned multiple times a day.                   

This list does not include the numerous doctors appointments and travels involved. The appointments get in the way of doing the list above, which no matter what the time must be concluded unlike "A writer must write everyday."

Now that you know about how my life has been, I can tell you how I have utilized it in making myself a better writer and creatively productive. 

First, I engage the world knowing that every instance is authentic and can be stored in memory or in notes to bring future prose to life. For example, sitting in a doctor's office waiting room is filled with observations that can be applied to work. I will notice how the office workers interact, their postures, their dialogue, their facial expression when dealing with patients or other employees. There are other patients in the waiting room. What to do? I recommend not staring or being obvious, but watch and listen. Each person has a story they are dealing with and each person from their clothes to demeanor are observational notes that can be used in composing fiction. The key is be aware. Always have your writer's eyes open. Bring a notebook if you must. 

Second, write down your emotions when things go well or horribly. Be aware. Use whatever poetic skill you have to describe them and write them down. Notice the smells, the sounds, the pains or joys, and write them down. All of these real life situations and feelings can be used by recapturing the moment when needed in one's prose. Is a character in anguish? Then flip through your notes and remember the real life situation, relive the event, and let that emotional condition guide your scene and character development. It is like an actor recalling traumatic events to cry. Condition specific recall inducement. It is also cathartic and can help you deal with your own issues as for many of us writers, writing is our therapy.

Third, a person can be taught to write but cannot taught what to say. So live. Hoard experiences. Go forth with writer's eyes and a writer's heart. 

Last, but very important, read. When you are stuck in situation where you cannot sit down and write but have access to a book, read. Examine the sentences. Find ones that affect you and break them down. How does it fit into the greater structure? Why does it stand out? How is information delivered? Is there a poetic structure to the sentence? This applies to the images, and characters and theme. Read with awareness. Read to understand the function and form and its so you might learn to do the same. 

You don't need to write everyday to be a writer. You don't even need to walk through the world with keen awareness everyday. Having your writer's eyes open all the time is exhausting, but you must use the events that are occurring to you be they good or bad. Build your larder of ideas and observational notes. Store them and keep them close because you never know when you will have the time to write but find yourself vacant of ideas. The notes, each and every one, could be the starting point of a whole new story or add to existing ones. 

One last thing. If a baseball player can't hit the ball and goes to the batting cages everyday and does the same thing over and over, no matter the volume, they won't get better. Sometimes, after writing and writing and writing and submitting and submitting and submitting, success might not come. This could be because you are a literary genius and the world just hasn't caught up to you or you just might not be as good as you think, which is most likely the case. This means getting help, self-evaluation, and discovering the problems with your writing. Then you become better and continue. Live an examined life and don't get caught up in bad habits that will only perpetuate by practicing them. Writing isn't typing. Writing is crafted and refinement of skills is necessary.       

I will share one thing. Soon, I will have time to write again. Not for more than a month or so though. You see, my mother who I have been caring for has about a month to live. The cancer could not be defeated. It has been a long struggle. The last year has been the most horrific though. Pain. Three Surgeries. Surgical Scars. Chemotherapy. Suffering. Anxiety. Fear. These all come to a close and the story of my mother's life is complete. I will grab my grief and pain, hold it close, and walk through the end with writer's eyes. One day, I will be able to honor this conclusion of a life less ordinary in story, authentic and true.    

Be well,

-Joshua Lee Andrew Jones

PS: this was not written to offend but to support. I think writing everyday if you have a stable life is a good thing for the most part and if you live an aware and examined life. 

PPS: support the arts. Nowadays, most writers don't get development deals as in the past where they could put out a couple "growth" works. Many writers who might be great never get the chance because publishing is a business and writing is an art. Sometimes they converge and other times they part.


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