Post-Blog Observations

July 8, 2010

Thursday 1:25 PM

I wonder what motivates other people in situations like mine? The ability still to find meaning in life? Love of even the life of suffering to which they are now reduced? Fear of death? Fear of damnation if they hasten their demise, much less take their own lives? Familial and societal expectations? Inability to face reality? Inertia? Blindly following their doctors' latest protocols for them? Focusing on the trivial things they can still try to control?  

 

July 8, 2010

Thursday 5:08 PM

Since last Friday, when I had a Tenckhoff catheter installed, nine liters of fluid have been drained from my peritoneal cavity—currently at a rate of 0.5 liters three times a day. It is unclear whether my body is now generating more than 1.5 liters a day of this excess fluid. It is also unclear if it could be removed at a faster rate.

One limiting factor on the pace of drainage includes consequent drops in my blood pressure. The drainage sessions are also now triggering  migraine headaches.

 July 10, 2010

9:27 PM

The hospice workers who are helping take care of me assure me that it will be impossible for me to stand the pain that is in store for me if I won't take opiates. So I have agreed to a pilot program, which I commenced last night, in which I am taking a small amount of laxatives to try to counterbalance the constipating effect of a tiny amount of oxycodone.

 July 10, 2010 

Saturday 10:38 AM

Heading into my minor surgical procedure at MSK on Friday of last week, the biggest risk was that I would have a heart attack or stroke, because I could not receive my daily injection of Fragmin-- which was prescribed for me by MSK-- the day before the operation. Accordingly, I was supposed to be injected with Fragmin as soon as I emerged from the operating room.

 My procedure was delayed for a few hours, and my anxiety about the Fragmin grew steadily. At each step before I received anesthesia, I questioned the relevant professional working on me to make sure that the administration of the Fragmin was in my charts and would take place as soon as possible after my surgery. Each time, I received assurances.

When I regained consciousness in the recovery area, I immediately asked about the Fragmin. I was told that the nurses on the floor to which I was headed and where I was to spend the night being observed would take care of it. As soon as I was wheeled on a bed to my hospital room, I asked the nurses to please inject me with Fragmin. As they could find no instructions in my charts, they said that they would have to have a doctor authorize it.

After a few more hours and their eighth call to try to get a doctor to respond to them, I gave up and asked Susan to go home and get a couple of syringes pre-loaded with Fragmin. When she returned with them, I injected myself with one of them. I think that my self medication probably violated hospital rules, and I would guess that it was not recorded in my charts. The nurses thanked Susan and me for taking care of the problem.

 July 10, 2010

Saturday 11:22 AM

 Much of my waiting time at MSK before my recent surgery was spent in its new pre-surgical facility. The spacious, well-lighted family area of this handsome facility features beautiful wood, tasteful fabrics, lovely art and nice restroom facilities. The area for the patients and healthcare professionals is also quite well designed.

Unfortunately, the three toilets for patients all have such shallow bowls that if a man were to sit on them to defecate, his testicles would be immersed in the water. I had first became aware of the existence of such gratuitously degrading toilet-bowl design in MSK's UCC.

Fortunately, by waiting until the doors preventing patients from exiting into the family waiting area were buzzed open to permit passage to some authorized person, I was able to use one of the normally designed toilets in that area.

July 11, 2010

Sunday 11:00 AM

There is a defect in the catheter that was inserted in me last week-- a jagged piece of plastic as sharp as the point of a knife. We wrap the defect in gauze and tape to prevent it from puncturing my skin.

 July 11, 2010

Sunday 6:40 PM

 Currently, my primary focus in life is getting through the sometimes painful and usually dispiriting maintenance chores of that day's 24-hour cycle. Although I have help with most of these chores, I perform some on my own. For example, I inject myself in the thigh each morning about 8 a.m. with Fragmin. Although my condition is deteriorating inexorably, there are learning curves associated with most of these maintenance chores that are allowing us to perform them more efficiently and in some cases with less discomfort for me.

 

 

URL for Susan's Blog

Here's my URL. There is nothing there yet.

http://susanharrisnyc.blogspot.com

Susan's New Blog

With the original purpose of Charlie's blog being convenient communication with family and friends, and Charlie having now decided to stop writing, I have decided to start my own blog for the sole purpose of meeting the original objective. As soon as I have it set up, I will post the URL here.

Search for Remaining Meaning

On Friday, July 1, the Interventional Radiology surgeons at MSK drained three liters of fluid from, and inserted a Tenckhoff catheter into, my peritoneal cavity. Because the catheter sticks out precisely where the belt line of normal trousers would be, I am relegated to wearing sweatpants. I now have a team of three "family substitute caregivers." Each morning and evening, one removes another half liter of fluid from me, for an allowed daily maximum of one liter per day. Although I have had fevers since Saturday, I feel less pressure on my stomach and can eat and sleep more-- so, on balance, I feel better.

I have reached the point that, whenever I leave the hospital, I feel as if a piece of me remains behind. Although I have entered home hospice care, MSK will remain my primary medical resource. Nevertheless, a primary objective of home hospice care is to minimize hospital visits.  

With so much of each of my days and nights now consumed with the ignominy of self maintenance, it is difficult for me to find adequate meaning to justify my continued existence in anything other than spending as much time as possible doing things with my immediate family. 

It seems a logical time to end my blogging. As I have not yet succumbed to the blandishments of the doctors, nurse-practitioners, nurses and hospice workers to take opiates, I have only myself to blame for any inane posts. My work on the book, Incurable: A Life After Diagnosis, is essentially done: it is in the hands of the publisher for copyediting and other decision-making. Although I am unfamiliar with the process, I assume that I may be consulted further-- which would be interesting and fun for me-- by the publisher, the editors, and the book designer.

Thank you for your reading of this blog and for accompanying me on the better part of my journey since my diagnosis as an incurable. I hope to continue to receive your letters and emails.

Bravery

Friends often tell me how bravely they think I am confronting my disease and impending demise. As my family can attest, if stoicism and bravery are synonymous, I am far from being a brave man. In response to pain and suffering, I do my share of moaning. And soon I will capitulate and start using the opiates that the doctors and nurses and my family are urging me to take.

Before and After

I cannot recall a July 1st in New York City as cool and dry as today. As the Fourth of July approaches, I think nostalgically of our many Fourths of July on Long Island playing in the annual three-day Liberty Bell golf tournament and celebrating with friends at their lake place in Connecticut. 

I tend to think of my life as having taken place before and after diagnosis. As I look back today, the 16 months since diagnosis seem almost as long as the 66 years preceding it. Yet, since diagnosis, I have celebrated only one round of birthdays for my wife, two children, mother, father, and myself, as well as one wedding anniversary, two Memorial Days, and one set of all other national holidays. My mother's second birthday since my diagnosis will be July 16.

R.E.M. Sleep

Recently, I have been taking about a half dozen naps each day. Most of them are quite short-- often of only a few minutes duration. Almost invariably, I dream. These dreams are rarely nightmares. 

I had long thought that it took awhile to go through several stages of sleep before reaching the rapid eye movement (R.E.M) stage that I had understood was a prerequisite for dreaming. I suppose that I must have a cumulative deficit not only of sleep in general, but of R.E.M. sleep in particular.