Update: 03/10/06

Medications:

10 mg. Compazine (for nausea).

60 mg. Oral Morphine in 4 doses.

120 mg. Extended Release Morphine.

1 mg. Lorazapam (for sleeping/anxiety).

How Joann’s Day Went:

VNA nurse Kathy stopped by today to check Joann’s vitals and medications. She noticed that Joann had trouble projecting her voice, a sign that her lung volume is still decreasing. Otherwise her lung sounds were clear, though her ability to exchange oxygen and carbon dioxide seemed lower. Joann slept most of the afternoon, unusual for her these days, but that turned out to be the result of having turned off her oxygen compressor to replace the filters, and I forgot to turn it back on. Bill noticed that it was off about 5:30 PM and turned it back on. Joann didn’t take any breakthrough (oral) morphine until that time and kept to the 2-hour schedule after that until bedtime. She needed a Compazine after dinner and an extra Lorazapam to get to sleep. Joann went to sleep at 3:00 AM.

I think my schedule is affecting Joann. I haven’t been able to get to sleep until 2:00 AM or 3:00 AM most nights lately. Joann seems to be following my pattern. I will try to adjust my schedule to be more like it was before, and getting to bed by 1:00 AM.

Note: About the Updates

The updates I will be posting are intended to cover Joann’s general condition and amounts of key medications she is taking. Notably, the oral and extended release morphine, which are indicators of her pain level and ability to breathe, will be shown. Any other medications or changes to dosages of other medications will be noted. A summery of how Joann’s day went will be noted as well.

Note: A Comment About Blog Structure

Just a short post to square myself with the order that this blog is being posted. So far, I have been trying to write this blog like a book, introducing people and situations before I actually get to the meat of the thing. I failed to realize that the "About Dying" blog focuses not on a story line, but an ongoing event that needs commentary. Alas, my attempts at organization are actually keeping me away from grappling with the issues at hand.

From this point forward, I will be posting commentary as they pop into my head. I’ll sort it out sometime in the future when I might post a table of contents for this blog with writings in the order they should be.

Meanwhile, if I repeat myself, keep in mind that the repetition is more for those who just jump into the middle of this than those who started at the beginning.

Stream-of-consciousness is so freeing!

At the minimum, I will try to post an "Update" of Joann’s condition every day from this point on. The rest of the entries will appear when the mood strikes, and I will post a compendium of Joann’s daily history starting from 2/21/06 when I started "Joann’s Log." After all, it’s the updates that keep family and friends informed.

Prolog: Joann Gottlund—Wife of Scot

Jo Ann Gottlund (55) (everyone, including the Feds and the State, call her Joann) and I started living together in May 2003 with our friend and roommate Bill Walker. Joann and I were married on October 27, 2004, her mother’s birthday. Thus, our wedding was sort of a birthday present for Joann’s mother, Mildred.

Joann was raised in Modesto, California and spent much of her adult life in Monterey, California, as a Registered Nurse practicing at Community Hospital of the Monterey Peninsula (CHOMP), and the Visiting Nurses Association (VNA). She has an adult son named David who lives in Sacramento, California, and works in the environmental protection field. Joann and I first met in 1997 and became friends. We lost touch a time later and didn’t rediscover each other until May 2003.

By the time Joann and I started living together, she was already considered "end stage" and terminal. As with many terminal cases of the non-cancerous variety, a definitive prognosis wasn’t possible. Everybody reacts differently to disease, and emphysema is manageable over the long term with careful care. Joann’s liabilities were her cardiac problems and extreme anemia relieved only by blood transfusions, causing her to not recover fully from each illness episode she encountered. Throughout the three years we have lived together, she has been in the hospital four times, sinking lower each time.

As Joann fought her own battle with life, so did Joann’s mother in Modesto. In Mildred’s case, she was simply getting old and nature was taking its course. Still, Joann and Mildred were a great source of companionship for each other, talking on the phone every night for an hour or so. In the end though, Joann and her mother, Mildred, would be in a horse race for who would succumb first. Unfortunately for Joann, her mother passed on January 11, 2006, at the age of eighty-four.

The last three months have seen Joann deteriorate faster than any other time and sink lower with each predatory illness she would contract. The day after Christmas 2005, Joann went into CHOMP unable to breathe because of a bad case of pneumonia. She was in hospital for two weeks before the antibiotics controlled her pneumonia and she could come home. She stayed on antibiotics for another three weeks without improving. Joann was also under VNA care during that time where they monitored her several times a week to see how she was progressing. The Joann’s condition was such that VNA was in for the long haul and about to install a remote monitoring unit when Joann went into the hospital once again.

Her mother, Mildred, passed away in January and that left Joann without anyone to talk with at night while I worked. From my viewpoint, she seemed to lose some of her determination to live. "Deflated," might be a good word to describe her mental state.

February 9, 2006 was the last time Joann went to CHOMP. This time it was a condition known as "wet lung," where fluid collects in the usable portion of the lung reducing the ability to get oxygen and expel carbon dioxide. She was placed on heavy antibiotics again, but five days later Joann’s doctors told her that any further treatment was pointless. They were sending her home.

Because Joann was under VNA care, I talked to her nurse and case worker about her coming home and how I would have problems taking care of her if she fell. My back, after three surgeries, isn’t the best and I worried that I wouldn’t be able to get her to the bathroom, shower or kitchen if I needed to. The caseworker told me about "home hospice," a plan by where Joann is essentially under hospice care with all the support benefits that provides yet can stay at home.

I talked to her doctors before they released Joann, and they agreed that it was the right time to put her under hospice care. Moreover, it was what Joann wanted: to die at home and not in a place of strangers.

Joann came home on February 14, 2006, Valentines Day.

Prolog: James Aaronn Scott—Blog Administrator

Hello. My name is James Aaronn Scott (though everyone calls me "Scot") and I’m "WriterByTheSea," the creator and author of this blog. If you have read my earlier posts, you might have guessed that this blog in about my wife, Joann, and the final stage of her terminal illness. This post being my third in the series, at this writing I haven’t had any response from others, but I expect there to be a divided audience with some thinking I’m a horrible person for putting my wife on display in this manner, and others who will gain something for themselves from the experience of reading this. Well, to my detractors I say: "Don’t read this then." To everyone else: "Welcome."

Joann and I created this blog as a therapy project for ourselves, to keep family and friends updated on the progression of her illness, and to share with as yet unmet persons who are in the same position, be they the caregiver or the care-receiver. For both of us, this is a completely new situation to be in. As such, I expect to be stumbling through the learning process during and after Joann passes on. This blog is intended to cover my readjustment to life alone as well as Joann’s passing.

Joann, on the other hand, felt that we could express things to each other through writing better than we could by talking. That isn’t to say that we don’t spend a great deal of our time together lately mauling the subject. Surprisingly, our paths of communication have been as open as they always have during our relationship. Being able to sit and be truthful with each other is one of the central pillars of our relationship.

Joann and I have been living together for three years now, one-and-a-half of those years as a married couple. We have known each other since 1997 and good friends for the past nine years. Our relationship has always been based on comradeship and companionship. In the last three years, Joann has brought me a stability I have rarely encountered in my single lifestyle. That stability translated into assuming responsibility for her, our home, and our lifestyle, something new to me after a life of wanderlust. I guess she made me grow up a little more.

Throughout the three years Joann and I have been together, she has been in the stage of her illness where she was considered fully disabled. It came as no surprise then that her current "final" stage and hospice status rapidly came upon us. We were expecting it; in fact, she had already outlived her primary doctor’s prognosis twice, by a year each time. Because of her illness and its progressive nature, I was accustomed to taking care of her in certain ways, and watching for signs and indicators of any downward slide. In those years we went through distinct opportunistic diseases such as pneumonia, severe acid reflux, severe anemia, accounting for four hospitalizations and numerous episodes at home requiring special medications and machines. Upon occasion, the Visiting Nurses Association (VNA) supported her at home after hospitalizations.

I understand that there is a difference in the way survivors act if the illness of a loved one has been long and arduous. I suppose I fit in that category. I’ve watched it happen to my father when my own mother died. She was in the hospital for a year and my father, being retired, spent all his time with her. Her passing wasn’t a sudden event, but a long, slow slide, wearing my father out in the process. I can see the similarities with Joann’s illness. That is one of the reasons we created this blog, self-induced therapy, one last thing she and I can share together.

A Short Bio

I was raised in San Diego, California, and thoroughly hated it. I couldn’t stand the heat in the summer and torrential rain in the winter. For whatever reason, I couldn’t stand the city either, except for Balboa Park and the San Diego Zoo.

When it came time, I fairly ran (via Greyhound Bus) to Berkeley, California, where I attempted to get an education. I wrote term papers for a living becoming one of the most prolific original, bogus term paper writers in the country, until I discovered computers. From then on, programming and systems design would rule my life until I had a stroke in 1992, which effectively took me out of the game.

In the early years of freedom I lived in Haight-Asbury, then spent years plying my term paper and computer skills all around the country, becoming a fixture at countless universities. In 1973, I landed in Denver, Colorado, and made it my base of operations for twenty years. After my stroke and subsequent burnout, I struck off for Monterey, California seeking greener fields. I decided to give up the technology game and retreat to a more bohemian lifestyle and do a bit of writing. I was all ready to wait tables or some such nonsense to support myself until I got something published.

In retrospect, I have to say that I never did anything in life the easy, normal way. I turned out to be too old to wait tables and there were no other jobs in the offing. The Monterey Peninsula is a small little collection of towns almost completely dependent on tourism. I had left all of my computers in Denver thinking that the spirit of Steinbeck and a portable, manual typewriter would change my life. When the money started to run out, I went back to programming computers, this time for the Navy and Department of Defense, while supplementing my income editing thesis for students at the Naval Postgraduate School.

All that changed in 1997 when I went through three back surgeries, each one more invasive and metallic. For a while, now that I owned a computer again, I built websites for motels on the peninsula. Soon enough I had saturated my market and began working behind the front-desk for those same people for whom I built websites.

Front-desk work gave me a lot to write about. The characters who populate cheap motels in a mecca of wealth and tourism, the boot of the motel owners on the necks of migrant housekeepers and dirt-poor white front-desk people, and countless other gripes about economic expatriatism. Today I live in the motel I work at. My apartment is newly constructed and quite comfortable. It is a harbor where Joann can remain at home and I am never farther away than the front-desk.

After all these years, I have achieved the simplest of things, stability for myself and Joann.

Prolog: Joann’s Disease—The Reason for This Blog

Let me introduce you to Joann Gottlund, my wife. This blog exists because she is terminally ill and dying. Many people associate terminal illness with such diseases as cancer, heart disease, AIDS, Alzheimer’s and simple old age. These are obvious diseases because they are physically recognizable as, or immediately associated with the eventual end of life. What though, about the person who appears healthy yet may also be on the road to death? By the time anyone takes notice (including the sick one) or symptoms begin to present themselves, that person may already be beyond meaningful help, other than to cope with a constantly deteriorating "quality of life" and eventual incapacitation, then death.

Joann has emphysema, one of the less obvious terminal diseases, at least until you become really ill with it. Here is how WebMD describes emphysema:

Emphysema is a degenerative disease that usually develops after many years of assault on lung tissues from cigarette smoke or other toxins that pollute the air. These toxins destroy the small air sacs in the lungs, called alveoli, that stretch as they transport oxygen from the air to the blood and then shrink as they force out carbon dioxide. As a result, the lungs lose their elasticity, and exhaling becomes difficult as the damaged lungs trap air and cannot effectively exchange it with fresh air. As the damage progresses, the effort needed to breathe increases and, ultimately, each breath becomes labored.

Emphysema is one of a group of lung diseases referred to as chronic obstructive pulmonary disease (COPD) that can interfere with normal breathing. Other diseases that come under COPD include asthma and chronic bronchitis. According to the American Lung Association (ALA), nearly 16 million Americans are estimated to suffer from some form of COPD, and COPD is the fourth-ranking cause of death just behind heart ailments, cancers, and stroke.

—From "Every Breath You Take," WebMD.com, 2006.

Joann wasn’t a smoker, except for one year in her thirties. Her emphysema resulted from a history of childhood pneumonia, pneumonia so long in duration and frequency of attacks, that Joann would be in the progressive stages of her emphysema by the time she turned twenty-one. Luckily for her, Joann was otherwise healthy and because of her health wouldn’t notice the effects of her disease until she turned fifty. She might have felt more tired than usual in her forties, but she could attribute that to getting older. The real symptom came in the form of a heart attack when she was fifty. Emphysema, as it progresses, overworks your heart, placing strains on it that would otherwise not be there.

Subsequent testing revealed that she was also very anemic, had high cholesterol requiring an arterial stent and a severe case of gastroesophageal reflux disease (GERD). Over the next year Joann would continue to deteriorate, eventually to the point where she qualified for full disability, Medicare and Medical to pay her medical expenses. When she was fifty-one Joann had a second heart attack and four additional stents were implanted.

That was four years ago. Joann was awarded her Social Security Disability because the examining doctors knew she wouldn’t get any better. Joann was already unable to work as a registered nurse and things didn’t look as though they were going to get much better.

On Februaty 14^th of this year, Joann’s battle with taking a breath is ending. After several visits to the hospital over the last three years, Joann was finally sent home from Community Hospital of the Monterey Penninsula (CHOMP) with the updated diagnosis of "terminal stage" emphysema and COPD. The doctors said that there simply wasn’t anything they could do for her anymore. With only a couple of months left for her, Joann was admitted into the Visiting Nurses Association "Home Hospice" program. Joann’s simple request was that she be allowed to die at home, not in some strange place amongst people she didn’t know.

For myself, having Joann back at home wasn’t a big stretch. Physically, I would have some problems if she fell, I wouldn’t be able to pick her up, but I run the motel we live in so I’m always handy and can see to it she gets her medication. When I’m not handy, our good friend and fellow roommate Bill Walker oversees the cooking and most of the shopping. Joann came home to a nice, safe environment in an apartment the motel owners just finished building for us. (More on this stuff later in upcoming prologs.)

Joann’s disease is complicated by several things, mainly her anemia and heart condition. The sum of these disorders is considered Chronic Obstructive Pulmonary Disease or COPD. The National Emphysema Foundation (NEF) provides this overview:

Chronic Obstructive Pulmonary Disease (COPD) is a term that refers to a large group of lung diseases that can interfere with normal breathing. It is estimated that at least 11% of the U.S. population has COPD, and incidence is increasing.

Other factors have the potential of playing a role in the development of COPD. They are air pollution, occupational exposure to dust and chemicals, repeated lower respiratory tract infections, maternal smoking, poor nutrition, lower socioeconomic status, and prolonged untreated asthma.

—From "COPD - What is it?" The National Emphysema Foundation, emphysemafoundation.org, 2006.

In Joann’s case, her COPD is primarily the result of emphysema, though she does have other complications, such as chronic bronchitis. The NEF has this to say about the interaction of these two conditions and COPD itself:

Most patients with Chronic Bronchitis do not develop obstruction (COPD). The 15% that do will eventually develop thickened bronchial walls, increased secretions, cough and eventually cyanosis (lips and skin appear blue), swelling of the feet, and heart failure.

Emphysema is a chronic lung disease that affects the alveoli (air sacs) and/or the ends of the smallest bronchi (breathing tubes). The lung loses its elasticity (similar to an overused rubber band), and therefore these areas of the lungs become enlarged. These enlarged areas trap "stale" air and do not effectively exchange with fresh air. This results in difficulty with breathing and may result in insufficient oxygen being delivered to the blood. In some cases, the patients also have difficulty getting rid of a waste gas called carbon dioxide. The predominant symptom in patients with emphysema is shortness of breath.

NOTE: While some patients with COPD have only chronic bronchitis or emphysema, most have some combination of both.

The causes of COPD are not fully understood. It is generally agreed that the most important cause of chronic bronchitis and emphysema is cigarette smoking. (Keeping in mind that Joann was not a smoker and her disease originated from repeated bouts of pneumonia.)

Symptoms (What the patients feel)

Unfortunately, patients may be symptom-free until they have lost 50% of their lung function! The first sign of COPD may be shortness of breath on vigorous exercise that may be ignored as an expected result of smoking. Patients with predominantly chronic bronchitis usually have cough and sputum for many years before they develop shortness of breath. Patients with predominantly emphysema usually have shortness of breath and develop cough and sputum during respiratory infection or later stages of the illness.

Signs (What the Doctor finds on examination)

Chronic Bronchitis: Initially the patient looks normal; however, as time passes the lips and skin may appear blue (cyanosis). There may be abnormal lung sounds, swelling of the feet, and heart failure.

Emphysema: Initially the patients do not appear blue at rest but eventually appear underweight and visibly short of breath. The chest may increase in size from front to back (the so-called barrel chest), and lung sounds may be diminished. Weight loss occurs in more severe cases. Swelling of the lower extremities is a sign of heart failure, also found in later stages of COPD

—From "COPD - What is it?" The National Emphysema Foundation, emphysemafoundation.org, 2006.

As of this date, Joann exhibits all the signs of "final-stage" emphysema with bouts of chronic bronchitis. Her feet are starting to swell because of reduced cardiac function, she weighs ninety pounds, she must constantly use about 3.5 times the normal amount of oxygen, she has great pain because the muscles in her diaphragm and chest are so overworked from labored breathing. All of her medications were changed from "recovery" to "comfort." Morphine is her main medication now, with large amounts of stool softeners. In a way, the new regimen is easier to deal with, she has gone from 21 medications to about seven, though I have to keep a log and administer the liquid morphine because she gets confused from all the drugs. My mindset has had to change also, but that’s another blog entry.

There is no way of knowing how much time she has left. The criterion for hospice treatment is that the patient has less than six months to live. It’s been three weeks since Joann came home and she is already a lot weaker. Yet, her spirits remain high and she assures me that its probably worse for those of us around her than it is for her.

I hope that’s true.

Preliminaries-Read This First!

This blog is not for the faint-hearted. To be blunt, these writings are about real life, and death, in real-time. This is not a reality show or some fictionalized drama played out by a starving writer looking for a handout. This is about my life, my wife's life, the way we are dealing with her terminal illness and the approaching end of her days.

I know the obvious question that may pop into your head, so let me answer it now before it is asked. After much discussion between my wife and I, we decided to launch this blog for a number of reasons both individually personal and jointly as life partners:

• As a source of personal therapy (hers and mine);
• To communicate to others who are in the same situation, that maybe the ending of one life does not automatically mean the end of another as well;
• The wish to leave a bit of her remaining in the world, sort of a memorial, as a comfort to myself and others who survive her;
• As a testament, that her life wasn't in vain if one other person is comforted by these writings

My wife, Joann, does not feel exploited by this blog, though if she does at any point, I will stop posting her side of the issue to it while making note of this change to all readers. As I pointed out earlier, this is a therapeutic endeavor, not a financial enterprise.

At this point, I have to tell any potential follower of this blog that if you have any problems with the issues under discussion here, then please go somewhere else. Otherwise, welcome dear reader! Joann and I will do our best to be as informative as possible.

About Donations

Yes, I am going to ask for donations. I have spelled out the reasons on the page that appears when you click on the PayPal® button at the end of every post. For the sake of introduction to this blog, I have posted the reasons as follows:

Joann is now under the care of the Visiting Nurses Association (VNA) Hospice arm. All of her previous insurance (Medicare, MediCal) have been directed toward VNA-Hospice, as it is now the sole responsibility of the VNA to provide both at-home hospice care and, eventually, a final few days at the end if necessary. This arrangement simplifies things greatly as we no longer have to be in contact with five doctors, a pharmacy, the hospital and two agencies.

The downside to this arrangement is that the VNA provides only items and medications related to the hospice process. Other items and expenses we cover out of our own pocket. Given our financial hand-to-mouth situation, we find ourselves struggling more than usual to afford the additional expenses.

That is what this donation is all about, providing the wherewithal to afford Joann the physical and spiritual additionals to help make her comfortable. I provide an outline of these expenses below.

• Because I work in trade for our rent (no cash changes hands), whenever I take time off to spend with Joann, I fall behind on the rent. Your donations could allow me more time with Joann without jeopardizing our home.
• As her condition deteriorates, Joann will need items such as special sheets for the bed, adult diapers, special foods and juices, and other things yet unknown. Your donation could relieve us of some of the financial impact of these goods.
• When the time comes, Joann will have to be taken care of according to her wishes. We have no insurance for funeral obligations and little cash-on-hand to complete the task. Your donation would ensure I could meet her wishes in a timely manner.
• I am sure there will be innumerable other expenses small and large in our future. At the moment I cannot predict what they will be or when they will crop up. Your donation will help with these unforeseen expenses.

When all is said and done, the passing-on complete, whatever of these donations are left over will be donated to the VNA-Hospice to provide services to others. In the meantime, I will keep careful records of all donations and the expenses they applied to, should anyone wish an accounting. I will regularly post on the blog the status of the donation fund.

The life and purpose of the "About Dying" blog does not, in itself, depend on your donations. This blog will continue regardless of donations, because the blog is about therapy, acceptance and recovery. These donations are to help Joann feel a little more comfortable and secure in her final days.

Thank you, in advance, for your donation.

About Structure

This is going to be a long endeavor. Starting down this road I foresee a need to make some broad distinctions as to types of entries that will be posted to this blog. Aside from this post (of which there will be this one only), there will be four post types:

• Prolog: This post type provides general biographical data, introductory information and anything else that may aid the follower of this blog to understand the participants and situations referred to in later posts.
• Backstory: These entries describe historical information deemed by myself as important to understanding some current information, situation, place or relationship.
• Update: Primarily to be used for updating Joann’s medical status.
• Journal: The meat of this blog. These are the thoughts, discussions, events and everything else comprising this journey.

If you, dear reader, have made it this far and not yet lost your nerve, then Welcome! Joann and I both hope that your participation in this experiment is as good for you as we hope it will be for us.

Read on!