Palliative Care - Waiting To Die

• "Palliative care is an interdisciplinary model that focuses on the comprehensive management of the physical, psychological, social and spiritual needs of patients with all types of progressive, incurable illnesses and their families. Palliative care ensures that values and decisions are respected; comfort is a priority; practical needs are addressed; psychosocial and spiritual distress is managed; and opportunities are available for growth and resolution."

Charles was transferred to Fort Roots VA Hospital, North Little Rock (NLR), Arkansas last Thursday. We grew up in NLR and Fort Roots was always known as the "Nut House" where insane people (veterans) were kept. How it came to be known as this is hard to say but the stigma still holds true in Charles' heart. Fort Roots was spoken of in whispers and images of decrepit, slobbering, child-murdering maniacs made us steer far clear of the old buildings that always looked vacated to me. Jokes and threats of "be careful or you will be sent to Fort Roots" were common.

Now the jokes are no longer funny or just scary stories to make children obey or stay away. The reality of Fort Roots in our lives today enlivens those childhood horror stories and engulfs us like the glowing green gelatinous blob devouring everything in its path in those old 50's horror movies. Devouring Charles. Devouring and suffocating our hopes.

• "Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families."--World Health Organization. Technical Report Series 804, Cancer Pain and Palliative Care. Geneva: World Health Organization 1990:11.

Charles was distraught to find out about the plan to transfer him to Fort Roots because all he could think about was that it was the end of the road for him and that he may never come out alive. That he may never go home again. He fretted over it daily and pleaded with family members to not let him die in the hospital. To promise him that. And not to die alone.

I tried to hold to that promise and lived in the hospital 24 hours a day most of my stay there, even sleeping by his side. A few nights I shared with my "little sister", Teresa who was down from Indianapolis but the sharing did little to ease the pain of watching what was transpiring with him. Sleep is impossible whenever you are awaken every few minutes either by alarms on the IV pumps, or nurses giving scheduled meds or pouring more anti-nausea and liquefied morphine into the tube protruding from his emaciated stomach, or by the wet gagging upheavals of the mucositis that threatens to choke him and drown him in his own fluids.

At some point during one of those agonizing time slowly slipping through molasses nights, I realized my own limitations, commitments and life responsibilities would not allow me to be the one who ensured his requests were met. I too was bound to fail Charles when he might be needing me the most.

• Palliative care specialists typically work in teams and usually are needed when the disease is advanced, life expectancy is short, and problems become complex and more urgent. In practice, these problems most often relate to uncontrolled symptoms, conflicted or unclear goals of care, distress related to the process of dying, and increasing family burden.

When Googling Fort Roots I was hard-pressed to come up with much on what is really going on inside. Charles is miserable and describes it as "the pits". He says, "It's a f***ing nursing home!" and gets angry with me when I ask him about the care he's receiving versus the care he was receiving in the primary care facility he was in while I was with him in Little Rock. He gets angry because he feels helpless and trapped. I get angry because I am helpless and trapped.

I feel guilt that I should have stayed just one more day to have been with him as he transferred to Fort Roots so I could see firsthand the difference between the two facilities. So I could have cornered his doctors and made them state explicitly if he was now considered to be under palliative care. If now, we are all just waiting for him to die without hope of a miracle recovery.

• The dying patient requires medical care for a variety of physical symptoms and needs. Medical treatment is now focused on making the patient as comfortable as possible. This treatment includes managing pain, fatigue, shortness of breath, and nausea and vomiting. The medical team should monitor the patient's treatment plan closely and review it to make sure that it is in the patient's best interests and in line with the goals of the treatment plan. This process may involve revising the drug regimen and discontinuing any unnecessary medications, deciding whether to continue nutrition, determining whether hydration (giving fluids) is appropriate, and providing comfort without artificial ventilation. The patient should be monitored by a nurse who can help to make him/her more comfortable by treating pressure sores (bedsores), bladder and bowel needs, immobility, and secretions. In some cases, when symptoms are unbearable and cannot be relieved, sedation may be offered to ease patient suffering.

That pretty much sums it up where we are today. At Fort Roots waiting. The one hope that I hold out for is the promise of Charles' primary care oncologist that told him that if it ("it" being death) became an inevitability then he would release him (at Charles' request) with pain medications to keep him comfortable and send him home. He told him that right in front of the entire family. Promised him.

Why do I have the feeling the doctor is lying? Why do I, in a way, hope he is lying? Why do I feel that my family doesn?t want Charles to come home even though they all promised Charles they would support that and not let him die in the hospital? Maybe because, in private, they have all reneged and told me they can't handle Charles being at home and dying and no one can care for him as he will need.

Who am I to bring into question or expose their secret (secret at least to Charles) whenever I myself cannot afford (in time and money) to be there to take care of him the way he will need to be taken care of at the end. Who am I to sanctimoniously criticize or question their love or devotion of Charles by their unwillingness to sacrifice and watch him die in his or their home? I can't. I simply can't, though it angers me to know I am hiding from him the obvious truth of the broken promises made. But I can't because I too am guilty and realize that not all promises can be kept no matter how sincerely pledged.

Emotional Twilight Zone of the Brain Dead Zombies

After driving back to Atlanta from Little Rock through the pouring rain I finally arrived home around 11 p.m. EST feeling like I was drained of all capabilities to think or feel anything. Yet, I was up by 5 a.m. the next morning going over the nearly 300 work e-mails that have accumulated during my absence of the last 11 days. I found myself merely clicking and staring without comprehending much of what was being said. The only things that stood out were the glaring lack of apparent support I've had from my staff while I was gone. More on this later, I am sure.

I went through the motions of getting ready for work and dreading trying to concentrate beyond my own skull. I spent much of my day shuffling papers in an attempt to organize an overwhelming workload and unable to pick up my phone to talk with anyone for fear of getting too involved or being unable to speak without choking up. Staring blankly at my computer screen and counting the ceiling tiles doesn't get a lot accomplished, I found.

I also discovered I was more tired than I think I may have ever been in my life. Tired to the bone, as they say. Tired and drained emotionally (how many times have I cried over the last several weeks? How many times SHOULD I have cried over the last several weeks?). Exhausted to the point of mental shutdown beyond the basic functions necessary to keep my heart beating and my lungs breathing. Seriously tired.

My loving wife recommended an early bedtime after drinking some chamomile and valerian root tea and I took the opportunity without hesitation. I slept better than I had in several weeks and am feeling much better today. However, the work is still almost insurmountable and intimidating but I think a lot of that is because my head still isn't screwed on straight. Hopefully, I will make some headway today and use the weekend to do some more catch up and resting. Is it possible to catch up on work AND rest at the same instance?

Ayden Harper Stowell Arrives

My first grandchild, Ayden Harper Stowell, born: February 22, 2005 @ 7:25 p.m. CST in Little Rock, Arkansas USA. 6 pounds 14 ounces and 19 3/4 inches long. Mother Shannon Marie O'Connor-Stowell and Father Mark Stowell are doing well and are jubilant at his arrival after a worry-free delivery at Baptist Medical Center.

The irony isn't lost on me of the potential for losing my younger brother while gaining a beautiful new life in my grandson. My emotions are so balled up in me right now that I cannot really comment too much further but will only say I am blessed beyond measure.

I am opting to be called Papa and hope this sticks. Seems a bit more dignified and "classy" as compared to "grandpa" or some other such moniker. I am still amazed that my little girl has grown up so quickly and is now a mother herself. I had constant flashbacks of her own birth while awaiting Ayden's arrival.

Life is so short...

The Normal Life

I am sitting in the waiting room of CARTI waiting for Charles to have his first radiation treatment with this new bout of cancers. He continues to decline and weaken. This morning he told me he didn’t know it took so long to die. I had no response for him and my mind searched frantically for something positive I could say. “Maybe you should be thinking about how long it takes to live, Charlie,” I was finally able to whisper. He looked at me and smirk spread across his partially paralyzed lips. “Yeah,” he croaked. “Yeah.”

Dr. Pena (not his real name but because his real name is so hard to pronounce he tells us all to call him that), briefed us on the results of his evaluation. There is a “slight” overlap of soft tissue that was the uppermost area of his previous treatments that will be exposed to radiation again during these treatments. He is concerned over this but feels he can reduce the impact by only giving ¾ of the dosage recommended in hopes of shrinking the tumor enough to be able to retarget the radiation cone outside of the overlapping area. He wanted us to know the risks of radiating this overlap area. It may mean anything from surgery or antibiotic treatments to correct the problems that could occur… or even possibly death caused by the very radiation that we are hoping will save (or at least, extend) his life.

I am sitting in the waiting room of CARTI waiting for Charles and praying. God, are you really listening? I am sitting here wondering what I am going to do as my time draws closer to having to leave and go back home and try to live a “normal” life. Back to my wonderful wife and 9 ½ year old son and the life of being father and husband. Back to my job that I have tried not to think about for over a week while all of my emotions and thought processes have been consumed by grief and grasping for hope in the slightest signs of improvement with Charles. Back to being out of the loop and only hearing second hand updates on Charles’ progress that never seem to contain the answers to the questions I would have asked had I been there in person. Back to waiting for that phone call that I don’t want to answer that will tell me that Charles’ suffering is finally over and he’s gone. Back to the life that I have so often taken for granted and now cannot allow myself to do so again.

Things must be different for me. I must take the soul searching lessons I have learned these last months and apply them to my own life so that when it is my time to face death I can do so knowing I have given it my best shot and will leave the world somehow better than when I was born into it. Honestly, I have not done that to this point in my life. I have half-stepped when I should have leaped. I have procrastinated when I should have been proactive. I have complained when I should have praised and counted my blessings. I have sat when I should have been running. I have dreamed when I should have been making those dreams a reality. I have been depressed when I should have been filled with joy and awe of life. I have succumbed to fear when I should have had bold courage. I have remained silent when I should have been shouting from the rooftops.

God forgive me for I have not lived or loved as I should have. God forgive me for I have sinned in what I have done but more importantly, in what I have not done.
I have a lot of internal rewiring to do…

Charles’ biggest fear is dying alone. I am powerless to promise him that that will not happen. All because I must soon return to my “normal” life and leave him to whatever his destiny is in my absence. I can never have a “normal” life again. Of that I can indeed promise him.

Smoke In My Eyes

I just walked back inside from having a cigarette. The guilt and shame of smoking hangs over me even more than the stench of the cigarette I just put out. I have quit smoking many times in the past but have always found some lame excuse for picking back up the habit and continuing just as if I had never stopped.

Mark Twain is quoted as saying,

“Quitting smoking is easy… I’ve done it hundreds of times.”

It would be funny if it weren’t so damn true and so tragic of an assessment of my own experiences with quitting.

Here I am struggling with the emotions and fears of my younger brother fighting to live through his experience with throat cancer that most assuredly was caused by his life-long habit of smoking (mixed with alcohol) and I myself am exposing my body to the cancer causing agents of his disease. What stupidity and ignorance… what a fool I am when I know the risks and dangers of something I should be able to control. How weak I am and what a poor “witness” to him in a time when he needs my utmost support and considerations. God forgive me. God help me.

I picked up a flyer at the hospital yesterday on one of my breaks from my bedside vigil. It was a positive piece on the benefits of quitting smoking and how your body heals itself beginning as soon as you snub out that last cigarette butt. Maybe contemplating it here in my blog will be an encouragement to me and others who are battling the demon of tobacco. (I don’t use “demon” here as a spiritualization or personification of tobacco but only as literary license to personalize my own struggle with this nasty habit)

When you stop smoking, your body begins to heal itself immediately. If you are thinking about quitting, you should know:

20 Minutes After Your Last Cigarette
Blood pressure drops to normal
Pulse rate drops to normal
Temperature of hands and feet increases to normal

8 Hours After Your Last Cigarette
Carbon monoxide level in blood drops to normal
Oxygen level in blood increases to normal

24 Hours After Your Last Cigarette
Chance of heart attack decreases

48 Hours After Your Last Cigarette
Nerve endings start to regrow
Ability to smell and taste is enhanced

72 Hours After Your Last Cigarette
Breathing becomes easier
Lung capacity increases

2 Weeks to 3 Months After Your Last Cigarette
Blood circulation improves
Walking becomes easier
Lung function increases up to 30 percent

1 to 9 Months After Your Last Cigarette
Coughing, sinus congestion and shortness of breath decreases
Your body’s energy level increases
Your lungs are better able to fight infection

5 Years After Your Last Cigarette
Lung cancer death risk decreases

10 Years After Your Last Cigarette
Lung cancer death risk drops
Risk of other cancers drops

Fighting the Good Fight

Over the past week, nearly 24 hours a day, I have stood by my brother Charles’ bedside in a VA (Veterans Administration) hospital called John L. McClellan Memorial Veterans Hospital in Little Rock, Arkansas. In July of 2004, Charles was diagnosed with throat cancer. That cancer had a hideous and horrific sounding name of Squamous Cell Carcinoma and the family was devastated.

Over the months I have observed Charles decline in health from an approximate 160 pound healthy man to a 94 pound skeletal wraith barely making a huddled mass under the rough government issued hospital blankets. In fact, it is hard for me to focus enough to even consider the husk of a human lying there as being the same person I know as my younger brother.

Charles is an Air Force veteran and thus qualified for treatments through the VA. He was a part of a phase II experimental protocol clinical trial that consisted of large doses of a three drug chemo cocktail and 35 consecutive days of concentrated radiation treatments… the last two weeks of which were two-a-day treatments. The treatments were considered the best hope of beating the Stage IV cancer even though it was unknown if he would survive the treatments themselves. The last radiation treatment was just before Halloween of 2004 and the following December he was declared “cancer free” after his CT scan. Charles and the family were elated and whispers of a miracle circulated even though there were some who felt uncomfortable with such a pronouncement.

Charles struggled with recovering from the treatments and continued to lose weight and fight dehydration and malnutrition and trying to control his pain. Several more stays in the hospital to keep him hydrated finally led to one night when he burst a blood vessel in his throat and found himself once again back in the hospital with complications. Emergency surgery to cauterize the wound ended up revealing that there was what looked to be new tumors and the nightmare deepened.

That brings us to this week and the long hours I’ve spent at his bedside as we all wait for what is to come next. A two inch tumor as been discovered behind his nasal passages and is pressing dangerously against his brain cavity. He has partial paralysis of his face and right eye. It is unknown if this is new cancer or a metastisization (to spread to another part of the body, usually through the blood vessels, lymph channels, or spinal fluid) of the old tumor. He has already undergone another round of standard chemo and they are pumping him with steroids and electrolytes to prepare him for radiation in hopes of reducing the tumors in size and thus relieving the pressure on his brain.

He will be treated at CARTI with the rare and famous Three-dimensional (3-D) conformal radiation therapy. This treatment is an innovative high-technology radiation technique. Computer simulation produces an accurate image of a tumor and surrounding organs so that multiple radiation beams can be shaped exactly to the contour of the treatment area. Because the radiation beams are precisely focused, nearby normal tissue is spared. CARTI is one of only four locations in the United States that has the equipment and technology to do this sort of treatment. I believe this is also called Tomo-Therapy (also read this and this) and is considered a second great hope for those who have a recurrent cancer or one too large to remove with a gamma knife treatment near the brain.

All of this is a severe over simplification of what is going on with my brother and what he is facing in his battle with this insidious disease. I thought that maybe putting some sort of verbal “face” on it here may help me to cope with what’s going on. It doesn’t. The tears and fears are all still here in my heart.