Tuesday, January 29, 2008
As the cancer nudges its way into various body systems and organs, it chokes off blood supply lines, interrupts normal metabolic activity, and insinuates itself in places where it is wholly unwelcome. Once it invades an area, the tumor will then begin to grow its own blood vessels, co-opting a nourishing blood supply for its own devices. Deprived of adequate circulation of blood, important organs or tissues become compromised and begin to malfunction or die. Chain reactions of metabolic chaos are set off, and delicate biological balances begin to be altered. At a certain point, there is no turning back, and the body begins an inexorable decline.
If treatment is chosen, the damage done by both chemotherapy and radiation can often exacerbate previous symptoms or create new ones. Radiation can permanently damage certain tissues which happen to be in the way of the treatment, and chemotherapy is wholly nonselective in which cells it destroys. For this reason, hair and other fast-growing cells are killed, including the lining of the gastrointestinal tract. Many cancer patients will say that the effects of the treatment are worse than the disease. An ironic reality.
When a patient comes to hospice, no further treatments are planned, and the disease is left to run its natural course. Left to its own devices, cancer spreads its wings and lodges in brain, bone, liver, lung---almost anywhere. And while certain cancers have a predilection for metastasizing to certain distant lands, it will also simply begin to work its way into locally adjacent sites, pushing through tissue, breaking down walls, filling up cavities, destroying connective tissue. If the cancer is in a visceral organ like the pancreas, it will choke off vital blood vessels and take up more and more space in a crowded abdominal cavity. Back pain, nausea, and radiation of pain to the flank will only add insult to injury as the cancer slowly takes over more and more bodily real estate. Running amok, symptom management and alleviation of suffering become the only goal.
As the patient nears the end, all medications are stopped which do not directly treat specific symptoms related to the cancer or its effects. Eventually, much to a family's dismay, medications for underlying chronic disorders (like thyroid diseases or diabetes, for instance) will simply be discontinued. Just as the cancer is allowed to run its course, other underlying conditions are allowed to simply coexist with the cancer, and the management of symptoms and the alleviation of pain and suffering hold sway as the laser beam focus of care.
As a clinician or a family member, this decline of the body as it is taken over by unwanted forces is difficult to witness. Family members and friends may face denial, anger, or any number of reactions as their loved one declines before their eyes. With any luck, skilled clinicians can provide the emotional, psychological and spiritual support which is so needed at this pivotal time. Clergy and other members of the care team can also provide additional support as the situation spirals inexorably towards death.
Countless patients and families experience this series of battles and maddening losses when cancer moves to a stage beyond treatment or cure. With physical illness comes loss of independence, mental decline, spiritual questioning, and psycho-emotional changes. When hope of a cure has vanished, then hope for peace and freedom from suffering become the focus, and a thoughtful hospice team will treat the family as skilfully as it treats the dying patient.
Many of us have walked this road with a loved one or known someone who has. Cancer somehow seems to touch a majority of families, either by direct experience or at least by association. In my own family, every man on my father's and mother's side seems to have died from cancer, and my step-father succumbed to pancreatic cancer less than five months ago.
I have known cancer intimately in my personal life and my professional life, and while it is an acquaintance I don't covet, it is one which has brought me deeper knowledge of the human condition beyond anything I could ever have imagined. Without a doubt, even more learning will ensue as I work in a hospice setting, but also simply from being a human being in relation to other human beings who are facing illness and the certainty of death.
To anyone who has lived through the loss of a loved one to cancer, I offer my sincerest condolences, my prayers for your healing, my prayers for your loved one's soul, and my hopes that your life and family will be further spared unnecessary suffering. In the face of loss and death, we all must face our own mortality and spiritual pain, and I wish you, dear Reader, strength and peace in your own travels down this often turbulent and troubling path of human existence. Namaste.
Monday, January 28, 2008
What is unusual about my hospice work is that, during any given shift, one nurse and one home health aide must not only provide direct care to six patients in varying states of illness, including medications, bathing, treatments, dressings, and toileting. We are also responsible for preparing meals, cleaning up after meals, feeding patients who need to be fed, doing laundry, answering phones, taking out trash and recycling, and doing general housekeeping. If it sounds like a lot, it is, and I often feel that I am torn in a dozen directions at once.
Just today, in the midst of tending to a patient's lacerations from an early morning fall and calling the medical director about orders, we were toileting patients, passing medications, answering call bells, preparing breakfast, and thinking about how to begin preparing for lunch as we cleaned up from the maelstrom of breakfast. Phew! With several patients who are at risk for falls, and several who may be entering the final stages of life, meal preparation can sometimes seem like the last thing one wants to think about. But it must be done, nonetheless.
Still, as a workplace wherein I come and go, it is still a relief to simply do just that---come and go. The benefits of not being full-time anywhere are still making themselves known. For now, I revel in the fact that there is nowhere I report to day in and day out. And that free agency is a blessing beyond measure.
Saturday, January 26, 2008
I try to not allow my pain to limit what I do, but I have to admit that it already has. Cross-country skiing? Forget it. Sitting comfortably for more than an hour? Generally not possible. Waking from sleep without discomfort? A rare occurrence. And even swimming, that form of exercise that seems the most low-impact? Aches nonetheless.
So what does one do with pain which seems to want to stick around and be a constant companion? I've tried ignoring it. I've tried catering to it. I've talked to it and rejected it. For now, it seems that I'll simply continue to try to live my life as if it weren't there.
Wednesday, January 23, 2008
How does one arrange one's days when they aren't built around the 9 to 5 framework? What parameters does one set in order to get things done, balanced with time to not do anything at all? Does one think, "Don't just sit there, do something!" or "Don't just do something, sit there!"?
What does it mean to not have one job that defines one's place in the working world? When someone asks the ubiquitous question, "What do you do?", what becomes your new ten-second elevator speech?
"Well, you see, I'm a newly-minted under-employed nurse slacker, waxing poetic---latte in hand---at a cafe with Wifi near you!" Or perhaps, "I'm a burnt-out nurse with more per diem jobs than I can count."
However one defines it, I know this first week has seen me working a few hospice shifts, attending my new Tai Chi/Qi Gong class and my new writers' workshop, and---dammit---crying uncontrollably during a matinee showing of The Kite Runner. My slacker cup runneth over.
I embrace this new life, even as I must accept not commuting with Mary every day, letting go of my beloved work family, and allowing the uncertain fickleness of this new paradigm to overrun my life. Gaining control of these new reins, I have no doubt that a kinder, gentler work-life will emerge, seeded with challenge yet relatively free of the trappings which so efficiently burnt me to a crispy shadow of my former self.
Here's a toast to newness and all its inherent uncertainty.
Monday, January 21, 2008
Last year, I had the privilege to visit the burial place of Mr. King in Atlanta, as well as his childhood home and the excellent and moving museum dedicated to his memory. It was a great day for me to visit those hallowed places, and I look forward to visiting again and again.
It is a profound day for our country---and the world---and I pause in thought in memory of one of the greatest leaders in history.
Sunday, January 20, 2008
Thank you to everyone who visits this site, for those who choose to comment occasionally, and for my fellow bloggers who send traffic my way. I am happy to say that blogging comes as naturally as walking these days, and I look forward to three more years of the digital journey.
Saturday, January 19, 2008
Of note, one of my greatest losses is the fact that my wife Mary and I will no longer be commuting together every day, and we will no longer be only 200 yards apart during our long workdays, meeting in the park for walks and sitting down for lunch in the midst of our harried days. As director of an inner city senior center just minutes from my former office, we have shared a place in this community for more than a year, and we both feel this palpable loss. I will be visiting weekly, able to actually be more present when I am indeed there, but there is still a loss incurred, and we are both processing its impact.
Yesterday, I was overwhelmed by my colleagues' generosity as a surprise luncheon was held in my honor. According to my wishes, money was collected for a donation to Save Darfur, but my thoughtful colleagues still had to throw in a gift certificate to a local spa and a very personal photo album with a photo of each person accompanied by a personal message. It was a bittersweet day, and some tears were shed (by myself and others). I was, and am, deeply touched by such an outpouring of good will and camaraderie. I will miss my work family deeply. Even though I will help out at the office on a per diem basis from time to time, it will never be the same, and that is clearer and clearer to me even now.
As sad as it has been to say goodbye to so many patients, it is truly a great relief to know that my responsibility for the management of more than eighty individuals' healthcare is over, and I can look forward to new types of therapeutic relationships with patients in varied clinical settings. Change is difficult and inevitable, and I embrace it willingly, even as moments of doubt and grief wash through me like waves.
For better or worse, I have shifts planned for both tomorrow and Monday at my new hospice job, short-circuiting any immediate sense of breathing room. However, there is plenty of time for breathing, and I plan to do a great deal of that each and every day.
For the moment, an inner sigh of relief, and a sense of peace that a chapter has been closed, a new one being written moment by moment, and day by day. I welcome the new, and will certainly cherish the old in a special place in my heart.
Thursday, January 17, 2008
Still, amidst it all, I am maintaining a relatively sunny outlook, and feel enormously good about my decision to leave.
I am always coming up with new metaphors for what our office is like, and this week it seems like a beach-head where an army has entrenched, digging bunkers and setting up strategic positions. Calls from patients are like shells lobbed into our midst, and the resultant shrapnel is the fallout of each call, sending us scurrying to put out the fires caused by each barrage. As each new call comes in, the administrative staff yell "INCOMING!" at the top of their lungs as we clinicians duck, hoping not to be hit with a bombshell of unmet need.
Tuesday, January 15, 2008
Towards the end of the day, I realized that my days of being responsible for all of these patients and their care are coming to a close. With just three days of full-time employment remaining, this is essentially my "field goal" for the week (note the highly rare sports metaphor). I kept saying to myself: "This is my final Tuesday. This is my final Tuesday." Waves of relief were juxtaposed with alternate (albeit smaller) waves of grief and/or loss.
One patient and I came to some semblance of closure on the phone this afternoon, although since she is the one person who I have actually given my phone number to, the closure had to do with our professional relationship rather than our new friendship. Our boundaries are clear, and I have no doubt that she would never abuse her personal access to me.
Conversely, other patients seem to be extending their needy tentacles towards me as I attempt to extricate myself, and I give non-committal answers when they ask me to "keep in touch", and I generally respond by saying that I'll hopefully see them around the clinic from time to time.
Sitting at the computer in the doctors' area, I print out narcotic prescription after narcotic presciption, and I give thanks that these days will soon come to pass. This narcotic merry-go-round of which I have so recently written really seems to often put me over the proverbial edge. And with 5:00 pm Friday on the not-so-distant horizon, I feel excited at the prospect of so many odious and redundant tasks falling by the wayside.
Still, the human side of nursing is the sweetest, and the blessings and compassion which I receive from the majority of patients warms my heart and lightens my soul. When I choose to share with certain patients that I have been struggling with chronic stress-related illness and pain, the compassion that I feel reflected back to me means more than I can ever communicate in return. Shared humanity is truly the beautiful core of a healthy therapeutic relationship, and I am moved that that beauty is reflected in the eyes of many patients as I bid a heartfelt adieu.
Saturday, January 12, 2008
Making periodic home visits to a considerable number of my patients has also engendered a considerable sense of intimacy and shared experience. Getting to know spouses, children, grandchildren and others during my visits, the web of human contact is strengthened and enlarged. Becoming somewhat of a fixture in someone's home---albeit a fixture who appears and disappears at will---creates a dynamic that simply cannot be equaled during any number of office visits. In terms of getting to know a patient and their life, there is nothing like sitting in their living room and directly experiencing their world by smelling the food cooking on the stove, seeing the room where they sleep, and getting a visceral sense of what this family's lifestyle is truly like. In my opinion, doctors should make house-calls to each of their patients at least once, if only to get a sense of how that person lives, information which is therapeutically priceless.
For myself personally, I have given my all to many of the relationships that I have nurtured with my patients over the years. Over time, that investment has paid dividends which cannot be measured, and I know that my presence has been beneficial to many. Now, as I prepare to take my leave, I can see the repercussions which the severing of those ties can have. For myself, I must process the guilt of leaving, of "abandoning" my patients (as several have described it to me as they react to the news of my departure). For them, they must accept my departure from their lives, and be receptive to a new provider and a new relationship which will have different dynamics and a entirely different feeling. For some, hopefully, that relationship will be equally or even more fulfilling for them. For others, things will just never be the same. But I remind myself that the only constant in the universe is change, and we are all experiencing that constant in this moment, whether we like it or not.
As I move into a new paradigm of work as a nurse, I will embrace the opportunity for more short-term relationships with patients. As a per diem visiting nurse, I may walk into a home for a brief interaction with a patient who I may never see again. With no history, no biases, and no preconceived notions, that moment is wide open for creative and compassionate interaction. As a per diem nurse in a small residential hospice, I may come to work one day and have a deeply emotional connection with a patient, only to return the following week to learn that that person has died. Thus, while a long-term investment is not an option in these relationships, it presents a golden opportunity to make each interaction count, holding nothing back and letting that moment be all that it can be.
While I am grieving the loss of many of the connections which I have nurtured over the years, I am simultaneously celebrating the relief that I feel as I relinquish the enormous responsibility that those long-terms relationships have brought to bear. Human interaction allows for depth and intimacy in many ways, and I plan to use my interpersonal skills in such a manner as to continue to satisfy my need for emotional intimacy with patients, even if those relationships are short-lived.
In this moment, as I write this missive, I feel a pain in my heart as the faces of patients I love pass over my mental movie screen. As I release my guilt and sense of responsibility, I shower each individual with compassion and understanding for their suffering, and wishes for healing and satisfaction with their lives, their health, and the relationships which they have with their medical providers. Even if I am no longer present in their daily lives, what we have shared is something which cannot be erased, and the value of those interactions---and the emotional and spiritual reverberations therein---can still be carried in our hearts.
Friday, January 11, 2008
One couple of whom I am exceedingly fond are simply held in a dear, dear place in my heart. I felt choked up as we shook hands the other day, and even though I promised to keep tabs on them, our days sharing laughs together are essentially over.
Another patient with whom I have been through a great deal turned away from me as she began to cry yesterday, and she said "it will just never be the same with anyone else."
Still another patient said, "I've been feeling really bad about it, but I know you have to take care of yourself. Thanks for going the extra mile for me."
Coming out of an exam room this afternoon, the medical director of the clinic looked at me and informed me without a shred of irony or sentimentality that I am breaking many patients' hearts this week.
It is a tough burden to bear when one provides the care that others so depend on. It's even more of a burden when one realizes that leaving those individuals behind is yet another loss in their compendium of loss and grief. Still, these relationships have a value which will carry us all forward, and new relationships will yield even more gifts and learning for each of us. Saying goodbye is a practice and an art, and for better or worse, I'm getting a whole lot of practice these days.
Thursday, January 10, 2008
An interesting piece of information that I learned today was that, contrary to what has been taught for decades up until now, we were concentrating way too much on mouth-to-mouth resuscitation and performing woefully too few chest compressions. Statistics clearly demonstrate that the old CPR paradigm was falling far short of the mark, and of the people who actually survived following CPR, less than 40% actually experienced good quality of life. Due to the relative lack of chest compressions performed in traditional CPR, brain perfusion was a mere shadow of what it could have been, thus many survivors were suffering unnecessary cognitive deficits from lack of cerebral oxygen flow.
The new and improved CPR instructions drill home the fact that it is compressions which save a life, not mouth-to-mouth. While keeping an open airway and providing periodic rescue breaths is still an intrinsic aspect of the entire procedure of CPR, it is the act of compressing the heart against the chest wall which perfuses the brain, coronary muscle and kidneys with the oxygenated blood needed to prevent negative sequelae. "Compressions, compressions, compressions" was the mantra that we heard all morning, and by the time we left, the new ratio of 30 compressions to 2 breaths was cemented in our brains, along with the strict instructions that compressions must be "deeper, harder, and faster" than ever before. No more fumbling around, re-checking the pulse and giving two breaths every 15 compressions. Get that heart pumping, and get a defibrillator on that chest stat!
Apropos of the notion of automatic electronic defibrillators (AEDs) we also learned about commotio cortis, a condition in which an otherwise healthy heart stops due to blunt trauma to the chest. Sadly, young athletes---school-age children, teens, and college students---die from this condition every year, which generally occurs when a young athlete is struck in the area of the heart by a ball, limb, or other implement at precisely the moment when the heart is at a specific point in the cardiac cycle. Of note, the use of AEDs by coaches and others involved in youth sports has shown dramatically increased survival rates for young people experiencing commotio cortis. Thus, it is in everyone's interest to lobby schools and youth athletic programs to obtain AEDs and train adults and young people in their correct use.
CPR is a crucial skill which can indeed save lives if used correctly, and especially if enough individuals in the society are properly certified. I encourage everyone to become certified, recertify every two years, and urge family members and friends to do the same. Someday the life that's saved may very well be your own---or that of someone you love.
Wednesday, January 09, 2008
While it is well-documented that pain is woefully and poorly managed throughout the United States, leaving countless patients suffering unnecessarily, I still find myself having mixed feelings about the ease with which so many providers seem to write those scripts for Oxycontin, morphine, and Percocet. At our local ER, it seems like there's a gum-ball machine near the revolving door, and patients simply have to say they're in pain and a prescription is produced in a knee-jerk reaction of instant gratification.
One of the questions we ask ourselves and each other about these patients on chronic narcotics is how long they will be on these meds? For the patients with failed back surgeries and other serious conditions, we consider that they may very well be on narcotics for life, and that is often the lesser of many evils. For others whose pain has no visible or discernible cause, we often question the intelligence of long-term narcotic use, understanding that tolerance will increase with time, and dependence only continue to deepen, both physically and psychologically. Now, often that dependence (which is different than addiction, mind you) is wholly warranted and acceptable, yet I feel that there is sometimes a lack of judiciousness on the part of the prescribers as they acquiesce to the pressure to write those scripts for controlled substances.
I do not question that narcotics are often needed for patients whose pain is not touched by non-steroidal anti-inflammatories and other non-pharmacological interventions, but sometimes I feel that those prescriptions move just a little too freely, especially when one considers that diversion (the selling of such medications to others for profit) happens on downtown street corners on a daily basis. Word has it, I hear, that our clinic is considered a great place to score some narcotics to sell at the bus station. A nice reputation to have.
Perhaps I feel uncomfortable with the amount of narcotics that fly off the shelves these days because a significant portion of my job these last few years has been fielding calls from my patients who are on chronic narcotics as they seek a new refill of their meds. Since many of my patients are former substance abusers and our level of trust in them is relatively low, some of them need to come to the office every seven days for a one-week supply of morphine or Percocet. While having to come in to see me weekly is inconvenient for them, it is equally a hassle for me in terms of printing up scripts, hunting down docs for signatures, and having all of this ready in a timely manner for frequently impatient patients. As I ready to leave my job of seven years, I quietly revel in the notion that I will soon enough finally escape from this narcotic merry-go-round.
Tuesday, January 08, 2008
Living in a college town, I wondered how many young impressionable female college, high school, junior high (and elementary!) students stood in line at this and other stores, reading those headlines, fervently ruing the few pounds they may have gained over the holidays. How do they compare themselves to those starlets and models? What messages are sinking in, especially into the brains of those school-age girls? What are we doing to girls and women in this culture?
As the media proclaim the dangers of obesity (some calling it an epidemic), we also run the risk of running too far in the other direction, sending our young girls (and some boys) into crazed tailspins of body image dysmorphia. As someone who was a chubby youngster, I myself was frequently on the receiving end of jokes and innuendos about my weight from relatives, family, and strangers alike. The resultant misguided self-talk about my body still reverberates in my mind to this day, and I still suffer the psychic consequences of the frequently cruel statements which so often came my way.
In this media-saturated world where there simply seems to be no escape---especially for the young---it is the responsibility of the society at large to monitor its language and the messages which it feeds to its most vulnerable members. From my point of view, we are failing miserably, and the resulting eating disorders and unrealistic body image suffered by young women across this country are the natural result of our stark collective failure. How can we right this wrong?
Our collective failure is, of course, our collective responsibility to rectify. But how can we do so when the powers of the media---and the very culture itself---thwart us at every turn? God help young women as they face this constant onslaught to which they can never measure up, and if we can't stem the tide, we will have no one to blame but ourselves.
Sunday, January 06, 2008
My name is Craig J. Phillips. I am a traumatic brain injury survivor and a master’s level rehabilitation counselor. I sustained an open skull fracture with right frontal lobe damage and remained in a coma for 3 weeks at the age of 10 in August of 1967. I underwent brain and skull surgery after waking from the coma. Follow-up cognitive and psyche / social testing revealed that I would not be able to succeed beyond high school. In 1967 Neurological Rehabilitation was not available to me, so I had to teach myself how to walk, talk, read, write and speak in complete sentences. I completed high school on time and went on to obtain both my undergraduate and graduate degrees. For an in depth view of my process please read my post,http://secondchancetolive
Throughout my lifetime I developed strategies to overcome many obstacles and in so doing I have achieved far beyond all reasonable expectations. On February 6, 2007 at the encouragement of a friend I created Second Chance to Live.Second Chance to Live presents topics in such a way to encourage, motivate and empower the reader to live life on life’s terms. I believe our circumstances are not meant to keep us down, but to build us up. As a traumatic brain injury survivor, I speak from my experience, strength and hope. As a professional, I provide information to encourage, motivate and empower both disabled and non-disabled individuals to not give up on their process. Please read my post, http://secondchancetolive
Thank you for your time and your kindness. Have a simply phenomenal day!
Craig R. Phillips, MRC, BA
Saturday, January 05, 2008
Patients' reactions are still varied. "But why?" is a common refrain, followed by worries about the future.
Yesterday, I was traipsing through the health center waiting room, hoping not to be noticed by any patients lurking in the corners. Suddenly, I heard my name being called and I turned. There sat a patient whom I have not seen for some time, and as I informed her of my imminent departure, her face fell, although she quickly smiled and wished me the best. "You'll continue to be in my prayers every day," she said, reaching out to give me a hug and a kiss. A sweet goodbye.
So far, I have chosen to give my home telephone number to only one patient who I trust implicitly not to abuse that information. She is an educated and self-sufficient woman who understands that our therapeutic relationship is coming to an end and any subsequent contact will be solely as friends. Additionally, I have told a few of my favorite patients that I may call them from time to time, but not to have any specific expectations. For the majority, it is a final goodbye, with the caveat that I will be working per diem shifts in the clinic and they may run into me now and then.
There are still three patients I have not told for whom I fear my departure will be difficult at best. Taking my fears into account, I am attempting to arrange joint visits with their therapists or case managers so that the news can be broken in a safe and supportive environment with another trusted professional on hand. These are the most tender goodbyes that could actually have clinical repercussions.
Overall, this process is going smoothly, and I am somewhat impatient to begin my new work lifestyle. Still, there is much work to be done---a plethora of t's to be crossed and i's to be dotted---before I can truly close that door behind me. I am processing my guilt at leaving my colleagues in the lurch, and I am also processing the fact that my professional identity---of working with the poorest and sickest of the poor and the sick---will need to change in the coming weeks and months. This does not diminish my self-chosen position as an advocate for the disenfranchised and vulnerable, but it does underscore the fact that I will not be slogging away in the trenches forty hours a week after the 18th of January. Can one leave the trenches and still be a fierce advocate for those in need of advocacy? I believe so, and I plan to figure out how to do just that.
Now for a weekend of R & R, and psychic preparation for the continued process of letting go.
Tuesday, January 01, 2008
Personally, this New Year is about self-care and optimal health, and rather than make resolutions to exercise more, eat better, and sleep eight hours a day, I will simply make a commitment to self-care in whatever form that that may take. Mind you, I am planning to make a list of self-care activities and choices that I can make, but rather than serve as a list of resolutions that I must follow without question, this list will be a reference point, a place to look for hints when I feel that I've lost the thread.
I see resolutions as dangerous for one good reason---they are inevitably broken. If I resolve to swim no less than 60 laps per week, I'll most likely fail half the time. If I resolve to write a blog entry every day, having that verbalized expectation will probably thwart me in my writing process. If I decide to eat absolutely no sugar for the next two months (something that I have done for many months at a time in the past), I also will probably fall on my face (with a mouth full of chocolate to cushion the blow).
My simple solution is to revolutionize my personal resolution process. Today I will generate that list of self-care options, and it will serve as a reminder of what I can do when my wheels are spinning. It is an ongoing process of discovery, and I see the New Year as a perfect time to recharge those self-care batteries.
Many happy returns to you and yours, dear Reader, and may the New Year open its heart to you in gentle and compassionate ways.