Monday, November 28, 2005

No Rest for the Weary?

Is there no break from cancer around here? Just as I hoped that all of my patients and their famlies were enjoying a uneventful holiday weekend, I come to work to learn that one of my favorites---a middle-aged man with inoperable throat cancer---was in ICU over the weekend after "bleeding out". Tumors actually grow their own veins and arteries, damn them, and some of those blood vessels can be rather friable (fragile). My patient developed severe hemoptysis (spitting up blood) and was rushed to the ER. He's now out of ICU and out of the woods---temporarily---but the spectre of further bleeds looms large, as does the fact that the inoperable tumor is beyond the practical benefit of further chemo or radiation. With a tracheostomy for breathing and a gastric tube for receiving nutrition, medications and liquids, the notions of quality of life, pain control, and the ability to remain comfortably at home come to the fore.

I just lost a beloved patient to cancer not three months after my other sweet guy succumed to it as well. Now patient #3 is showing signs of decline, all when the week of the fourth anniversary of my best friend's murder is upon us, the actual anniversary being this Friday, December 2nd.

Ah me, oh my: death, illness and Winter sure can pack a triple whammy. All of this, however, is assuaged by the warmth of home, the love of family and friends, the dawning of the Solstice in just over three weeks, and the turning of the year, as arbitary as that may seem. Bono may have once sang, "Nothing changes on New Year's Day", but everything can change if one views it through the proper lens. My friend was murdered---but we've grown, he's moved on, and we're the stronger for it. So my patients die---we all must follow suit, and it's a priviledge to see them through the process. So the Winter is long---Spring and Summer are just that much sweeter for it.

Is there rest for the weary? If they seek it, it's in the very breath they take.

Saturday, November 26, 2005

Transissues

A friend of ours divulged to us the other night that he is undergoing a transformation from living as a biological man to living as a woman by choice. He is assuming a female name, dressing as a woman, and embracing a feminine identity that he has felt near and dear to his heart since he was very young. This incredible conversation sparked my desire to write about my work with transgendered clients, something I have yet to address here on DD.

My friend's private journey aside, I have had the pleasure to have a number of transgendered patients over the years and it's developed into one of my keen professional interests. Having always considered myself a gay/lesbian/bisexual ally, my close work with the transgendered has led me to embrace the role as transgender ally as well. In my current job, I have had one patient who was a female-to-male (FTM) transgendered individual, and I currently have two MTF patients with whom I am very close. Their experiences inform my current (limited) knowledge base.

Last November, at a conference of the Association of Nurses in AIDS Care (ANAC), my eyes were opened wider than ever by Sam Lurie, the speaker who delivered the Plenary Address on Transgendered Health Care. Sam's approach to trans healthcare entertains, educates, and advocates on a variety of levels, and since that conference my interest has been duly piqued.

When thinking about this issue, the average person makes assumptions, remembers the "trans-sexual" label which seemed to be so popular in the 70's, and images of trans stereotypes may cometo mind. I have vague memories of a famous football player who underwent gender reassignment surgery when I was a kid, and somehow that image became confused with another memory: Joe Namath, another football star, doing a commercial for men's panty hose. But I digress.

Thanks in large part, I think, to the success and political acumen of the women's rights, civil rights, gay rights, and AIDS rights movements, the transgendered community has gained political power, entered the mainstream consciousness, joined forces with the Gay, Lesbian, and Bisexual communities, and forced society to gaze deeply at its definitions of gender. Now for some, this may be such a stretch as to snap the cognitive rubber-band, figuratively speaking, when taken in context with the current culture wars over the definition of marriage. But be that as it may, issues of gender and gender identity are and will continue to be part of the cultural zeitgeist and call for our (divided or undivided) attention.

That said, from the point of view of a healthcare provider who wants to be "trans-friendly", the germaine issues are many. First of all, one must become familiar with the nomenclature of the trans community in all its form and derivations: FTM, MTF, trans-man, trans-woman, op, non-op, and the list goes on, many terms being used within the trans community itself which I would not use in my own conversations. (This is similar to how the African-American and gay communities have re-adopted terms that were previously used as derogatory in the wider culture, breathing new life into those terms for the purpose of empowerment and self-definition.)
The health issues which a transgendered person faces are many. Contrary to popular opinion, there are many people who define themselves as trans who have not had---and will never have--- gender reassignment surgery. Perhaps there are economic barriers to such a radical transition, or perhaps the person is comfortable with their biological genitalia and simply prefers to "present" as the other gender. This is sometimes referred, as I have learned, to being "Op" or "Non-Op", and I have also seen the term "Pre-Op", meaning someone who is preparing for surgery, although that preparation may last a lifetime and never actually occur.

Surgery aside, many FTMs and MTFs will choose to undergo hormone therapy, a course which will cause physical, physiological, and even emotional changes for the individual. If a man takes "feminizing hormones", he will grow less facial and body hair, develop a softer voice, softer curves, and lose muscle tone, gaining fat in the hips and more of the familiar "hour-glass" shape of a female body. A woman taking testosterone will find her voice deepening, facial hair growing in, and muscular growth occuring. Both of these groups will find, aside from physical changes, documented alterations in thinking and communicating styles, lending credence to the theory that gender is widely dictated by hormone levels which can be altered and adjusted based on the way in which the individual wishes to present to the world and and be perceived by the world.

Hormone therapy presents challenges to the healthcare provider, both in its execution and monitoring. While there are protocols for such therapy available to the curious and conscientious provider, many doctors might feel uncomfortable with such "off-label" usage and decline to be involved. Not covered by any insurance, cost and availability become factors, and the quality of hormones obtained through the black market could be questionable, as well. Off-label or not, patients need expert guidance, compassionate care, professional oversight, and an unbiased advocate.

Picture this: you are a woman who has always felt that your true identity was male despite the genitalia with which you were born. You decide as a young adult to undergo hormone replacement therapy, knowing that it is most powerful and effective before a person is in their twenties. You grow facial hair, hair on your legs, arms and chest, your muscles develop, your voice deepens, and you are able to go out in the world and "pass" as a man.

There are several complicating factors in our scenario, however. Perhaps you would like gender reassignment surgery but it is an economic impossibility for you, or perhaps it is not even a question and you're happy with your current body vis-a-vis hormone replacement. Being biologically female, you must undergo a pelvic exam and PAP smear every year, an exercise which tests all of your abilities to advocate for yourself and educate others about your healthcare needs. When you enter the health center, you are seen as a man and there is no doubt as to your gender. However, when you get to the front desk, you need to communicate to the receptionist that you are there to see the gynecologist. How does she or he react? Do they ask why, as a man, you need to see the gyn? Do they verbally abuse you for being a freak? Do they "out" you in front of the other patients standing in line? When they realize you are trans, do they loudly ask, "SO, DID YOU HAVE 'THE OPERATION' YET?" (This would be akin to me walking up to a patient in the waiting room and asking if I could see their genitals!) How many of these trials and tribulations will you endure for the sake of your health? How will you decide which rest room to use? How many dirty looks can you entertain? How much of this stress is worth it?

Once you make it into the exam room, the next challenge is the medical assistant. Will you need to explain again that, yes, you look like a man, but yes, you have a vagina and need a PAP smear? Will you overhear the medical assistant giggling with her colleagues in the nurses' station? How will the gynecologist react when she walks in the room? Will she be understanding? Repulsed? Judgemental? Refuse to examine you? Maybe this will be your last pelvic exam for the next ten or fifteen years. Avoidance of such traumatic experiences might be understandable, but could have grave and perhaps fatal consequences.

As you can see, most of us would never even consider such scenarios, let alone think about how to assuage fears and change insitutional policies which discriminate against the transgendered community. As a healthcare provider in a world of fixed gender definitions and rigidly held beliefs and stereotypes, advocating for patients on this level can be an uphill battle on the institutional and cultural level. But having seen the pain and confusion which such experiences can cause, I am on the side of advocating, fighting, and pushing for equality and healthcare parity for a population whose needs are many, and who are, whether our culture accepts it or not, here to stay.

Sunday, November 20, 2005

A Call, A Death, A Final Goodbye

The call just came at 5pm. Mary answered my cell-phone and received the news: "A" stopped breathing just moments ago. The hospice nurse is on her way to pronounce her dead ,and the family is gathered around her diminutive body which has ceased its earthly rhythms.

A votive candle is now lit in the lap of the Buddha statue on our dining room altar. In some cultures, candles are lit for the newly dead to light their way through the confusion of the first hours of death. It is said in the Tibetan Book of the Dead that the "Bardo" stage---the stage of transition following death---can be shocking and confusing for the unprepared soul, and there are specific meditations that can be practiced to usher a soul through the Bardo towards enlightenment.

"The Tibetan Book of the Dead (also called The Bardo Thotrol) from Tibetan Buddhism was traditionally read aloud to the dying to help them attain liberation. It guides a person to use the moment of death to recognize the nature of mind and attain liberation.

"It teaches that awareness, once freed from the body, creates its own reality like that of a dream. This dream projection unfolds in predictable ways both frightening and beautiful. Peaceful and wrathful visions appear, and these visions can be overwhelming. Since the awareness is still in shock of no longer being attached to and shielded by a body, it needs guidance and forewarning so that key decisions that lead to enlightenment are made. The Tibetan Book of the Dead teaches how one can attain heavenly realms by recognizing the enlightened realms as opposed to being drawn into the realms of seduction that pull incorporeal awareness into cyclic suffering."

I loved “A” more than any patient that I can remember. I can’t quite put my finger on why that is. Maybe it was all of the cigarette-smoke-laden plantains that she gifted to me over the years in her inimitable way. Maybe it was the way she would react with genuine surprised delight when I would arrive at her home, even if we had just hours earlier agreed upon a time for my visit. Maybe it was how, even in her most sickly state, she would inquire after my son and wife and dogs, sending her blessings to them and all of my extended family. I realize that this past Friday was the only time she had not asked that ubiquitous question, her mind being too disengaged from her body to make such an effort, although I’m sure that the intention existed in her mind, even if the words were unsaid.

It's funny how I never tired of her questions, her inability to grasp some of the things I tried to teach her, her reluctance to make changes that we felt were necessary for her health. She was apparently knowingly infected with HIV by a man whom she had met during her fifth decade of life, but she embraced and rallied around that diagnosis with determination, and her steadfast adherence to the medications kept her virus completely at bay for many years, even at the time of her death. Was the cancer that grew in her chest related to HIV even though she had no detectable virus in her blood? Perhaps, but the data is still not there for us to draw any firm conclusions. Whatever the case may be, she smoked like a chimney and only stopped when 24-hour oxygen was absolutely required to sustain her.

Over the last five years, I would often use "A" as an example of the complicated nature of my patients: HIV, diabetes, hypthyroidism, anxiety disorder, major depression, psychosis, history of suicide attempts. But I would also use her as an example of the closeness and personal satisfaction that I gleaned from my work, emotional depth created in such bonds of professional therapeutic relationship and, yes, friendship. Granted, the friendship in its active form was somewhat conditional based upon a one-way relationship of my visits and attentions to her health, but the true spiritual friendship and bond was one born of a kinship that neither of us ever defined and only recently verbalized. Just a few weeks ago, while visiting her in the nursing home, A and I agreed that perhaps we had known one another in a past life, and that there was no way to fully understand why we felt so closely connected. She was quite lucid at the time of that visit, somewhat sad and thoughtful, but readily agreed that our kinship was special to her.

A was a gem, and I will miss her dearly. There was something magical about her that touched me deeply. I am blessed to have known her, and I send her my love and blessings as she leaves this earth, leaves her body, and leaves her family to carry on in her memory. Goodbye, dear friend.

Friday, November 18, 2005

Goodbye?

I left work early, determined to visit my dying patient and check in before the weekend. Being Friday evening, the traffic was snarly, but I braved the morass and made it there safely.

Asleep in bed, "A." was curled in the fetal position, turned towards the wall, the hum of the pneumatic mattress and oxygen tank providing ambient white noise. Her daughter sat with me on the adjacent bed and we talked of A's life, her history, their relationship, family. She showed me some photo albums and I beheld images of A's more distant past which had been mostly a mystery to me. I always know that a larger life and history exists behind and within every patient: childhood, adolescence, family, travel, work and career---but those stories do not always enter into the ongoing conversation, frequently lost in the shuffle of health problems and medical care. Nonetheless, these details always help to flesh out one's portrait of the individual and are infinitely enlightening.

After some time, "A" awoke, and it seemed to take her a few minutes to register who I was. The change from three days ago was striking. She seemed wasted, thin ("cachectic" in medical terminology), and disoriented. She sat on the edge of the bed with our help, and made efforts to stand, which she did with my assistance. When I inquired where she wanted to go, she had nothing to say, so I invited her to dance, and we stood there, almost motionless, my arms around her, her right hand hooked in my belt, her left hand holding my right hand. Her daughter stood by, saying "Baile, mama!", "Dance, momma!". The excitement over, we sat on the big bed which sits just adjacent to the hospital bed, and "A" leaned against me as I held her upright, my arm around her thin shoulders. I said "I love you" in Spanish, and then in heavily accented English (the way she would say it, the "v" in love more like two "F's", sounding more like "luff"). She said "I luff you too" in her gutteral and congested voice which now emanates from her tightened throat. It was a poignant moment, and then the energy began to shift as I prepared to leave for home.

A's daughter asked me about A's fluid intake, and I advised her to keep it as minimal as possible in order to keep her lungs from filling up with fluid. I explained how A's kidneys are shutting down, producing little, if any, urine, and her daughter confirmed that A's urine output in the last 24 hours had been scant, and quite concentrated, a sure sign that her bodily processes are waning. I suggested popsicles as a nice treat and source of fluid and fructose, and told her how she can make her own or buy some at the store. The weight of A's small frame was pressed against my side.

Taking my leave once again, I said goodbye, again not knowing if this was the final goodbye, or just another moment of letting go, preparing for the real thing. When A's daughter had been out of the room, I had told A that she was free to go when she felt the time was right, that there was nothing to fear, that she was loved and cared for, and that her family would be OK after her departure. I remembered the last time I had told a patient that several months ago, and he had died within thirty minutes. I think A may last through the weekend, but I wanted her to know that she could consider leaving her body when she felt it was apropriate and right, and I know that my word holds great sway for her. Her vacant stare could not convey the deeper comprehension that I know she was experiencing in that moment.

These goodbyes are not just that---they are also hellos to the next incarnation, the next permutation. We practice and practice all our lives, letting go of possessions, people, places, experiences, ideas, concepts, delusions, desires. "A" is about to let go of the greatest anchor to the physical world---her 69-year-old body---and she can do so with peace and equanimity. I wish her well these next few days as she continues her process of release, and if I do not see her again in this life, I can bless her on her journey with a clear conscience and knowledge that our souls shared a connection that is greater than the sum of our physical selves. Those connections are eternal and incorporeal, yet no less real than the shaking of hands, the warmth of fleshly contact. There is nothing more satisfying than true connection with another. Blessings on you, A, as this physical journey draws to its natural close. To paraphrase Elizabeth Kubler-Ross, we live until we say goodbye.

Wednesday, November 16, 2005

Impermanence

A group of Tibetan monks is creating a sand mandala at the University of Massachusetts Fine Arts Gallery this week. Although we were unable to go during the day to see the monks in action, we were able to see their "handiwork of devotion" this evening before the gallery closed.

The mandala is created after an opening ceremony to bless the room and make it conducive for this deeply spiritual and devotional ritual. The monks then spend 3-4 days using beautifully and richly-colored sand to create a design based upon Tibetan cosmology and sacred geometric designs. Poignantly, once the sand painting has been completed after three days of painstaking and ceremonial labor, it is ritualistically destroyed as a lesson in the impermanence of all things. The sand from the mandala is then released in a running body of water in order to share the energy of the mandala with the world at large.

Coupled with performances by Tibetan artists, video installations of Tibetan culture, and other informative lectures, the Tibetan culture is being duly revered and honored this week here in Amherst. This is even more special based upon the fact that many Tibetans have chosen to make Western Massachusetts---and especially our beloved "Pioneer Valley"---home, as part of a concerted Tibetan resettlement project. Our Tibetan neighbors are an integral part of our community, and add a great deal to our town's cultural richness.

It is impermanence which informs much of my work vis-a-vis individuals who are dying, finishing their time on Earth, preparing to leave this plane for the next, whatever that may or may not be. Like my recent small epiphanies as I stare into the eyes of the patient of whom I have written so much lately, this concept must make its mark on one's soul and psyche. In this world of exponentially increasing consumerism and ownership of treasured objects and assets, one must be reminded---ad nauseum, if necessary---of the thread-like strings which so loosely bind us to these "things" which we think define us. The computer, the house, the car, the clothes, the CDs, the books, the money, the stocks---these are not us, but we incorporate them as part of our identity, our sense of being. Add to this the impermanence and fluidity of health and even life itself, and mortality begins to seem like one giant lesson in letting go, realizing that the grip of the material world is, at best, a weak and unenlightened grasping at straws, if not an illusion altogether.

So the next time I fret about my slow Internet connection or malfunctioning flashlight, I must remember the mandala and the lesson it bears. But the lure of the material world is powerful and I will no doubt fall prey to its persistent voice again and again. But that mandala---and other practices like it---can make an indelible and unforgettable mark if one will allow the magic to penetrate the noise from time to time.

It's been said that the only certainties in life are death and taxes, but I would beg to differ. I would say that the only certainty in life is impermanence itself. And that is a permanent condition.....

Tuesday, November 15, 2005

A Sweet Visit

I finally made a visit to my dying patient's home, or rather her daughter's home. I say that she's dying, but aren't we all? There she was, laying on her side in a hospital bed with a special pneumatically-controlled mattress provided by the hospice nurses. These beds are now de rigeur when patients are bed-bound and dying at home---pressure points and needless skin ulcers are avoided. A very valuable tool that most people in the world lack as they lay on their death-bed. What relative luxury.

Now that she's home and really only on "comfort measures", she receives morphine gel by mouth as needed, Ativan and Haldol liquid for anxiety and agitation, oxygen around the clock, and other "as needed" meds for nausea and other symptoms. Due to the large mass in her chest, she is limited to very soft foods and small amounts of liquids. It's said that a human can live a month without food, but only a week without water. At her current intake, she is able to just sustain herself, so no one knows how long this process might last. If the cancer is not advancing, she could remain in this state for some time, though the risk of infection and other complications is always high.

With "comfort measures only", she is no longer taking her HIV meds, diabetes meds, thyroid hormone, etcetera. She is now on a bare-bones regimen geared towards comfort and freedom from pain and psychic distress. This is often very difficult for the unitiated to understand, but it is quite standard practice in these sorts of situations. Additionally, as someone's body begins to shut down and they remain more and more confined to bed, drinking excessive amounts of fluids can only serve to cause fluid accumulation in the lungs, leading to pneumonia, congestive heart failure, or at least the feeling of drowing in one's own fluids. Not pleasant, but also a difficult concept for many families of the dying to grasp and accept. It seems cruel to limit fluid intake, but it is enormously helpful to the lungs and kidneys as they begin their deneoument.

I sat with this woman for about thirty minutes. As always, she asked about my wife, son, and dogs, and looked very deeply into my eyes. Her pupils seemed enormous, and her eyes themselves appeared equally huge---dark pools of feeling and life. I could not get over her eyes and told her how large and profound they seemed.

When asked if she believes in reincarnation, she replied "yes" quite quickly. I inquired about what other lives she has led, and she said that she had been an animal that lived "in the mountains". Pressed for more details, she could not elucidate other than to say that she has been many different animals in her time and that this life is her first as a human. She did, however, state clearly that she and I had met before, but I forgot to ask in what form I had made her acquaintance.

As is frequently the case when I visit her over the last few months---whether in the hospital or at home---we spent a fair amount of time looking into each other's eyes, both with and without a smile as we did so. I encouraged her to close her eyes, and stroked her face and head as she rested on her arm, the small stuffed moose which I gave her in the nursing home cradled in the crook of her neck. In her broken English, she looked at the moose and said, "I love you, cookie", hugging its plush softness to her face.

Sitting in silence at the side of the bed, I wondered to myself what might be going on in her mind at this time, no anti-psychotics to control her long-standing mental illness and anxieties. That said, when asked about her fears and concerns, she readily replied that she had no fears and no concerns, and felt no fear of neither death nor suffering. She seemed at her most peaceful---more so than at any other time in our five-year acquaintance.

I took my leave reluctantly, needing to head back to the clinic. Since I am no longer her medical provider, I can come and go as a friend, assured that the hospice nurses are providing the best care and comfort to my beloved friend. I know the day of her departure is not far off, and feel fairly clear that it will happen before the year turns its unavoidable corner.

Death can be soft, clear, almost effortless, and this is truly my wish for my friend. May death visit her with the gentlest of caresses, and whisk her away in a rush of flower-scented breath. This is my request tonight. May it be granted. May she pass with ease. May her passage be one of joyful release and return to the source. May she return to whence she came, and know that she graced my heart as she passed through this harsh, troubled, and painfully beautiful world.

Sunday, November 06, 2005

Occupational Hazards

Identifying as a caregiver in this world is a sword with at least two edges. Being a caregiver---"giving care" as part of one's daily work in the world---is in many minds a noble cause and profession. This may be true to some extent, yet it brings with it many hidden occupational hazards. As I have discussed before, "compassion fatigue" is always around the corner, along with many of the other so-called "negative" emotions. Direct care of other human beings is a tiring occupation yet offers numerous rewards of spiritual, if not monetary, value.

Teaching brings its own rewards, as I have discovered. Having been offered a position as a full-time teacher/program coordinator, the pull of education has had some influence in my world, yet my hesitation to enter that sphere full-time is quite strong. Being dedicated to caregiving, I understand that I would need to continue to work in a direct care setting even if I accepted a position as a teacher. How else can a nursing professor teach the art and science of nursing if not him- or herself still immersed in the world of patient care? So that career choice would still necessitate having multiple jobs and multiple professional roles. I was also just offered a position as a nursing supervisor/manager for a local office of a corporate nationwide visiting nurse agency. As a man in a predominantly female field, I would then join the ranks of men who have risen from the ranks of caregivers into that of management, adding to the perception that men rise more easily to management positions in nursing in large part due to their gender. True or not, this is a prevalent dynamic in the field and one which I am hesitant to become a statistical member of.

For all of its flaws and shortcomings, I still feel an emotional and professional allegiance to my current full-time position, providing care in a cutting-edge nurse-run organization which may eventually serve as a model of delivering medical care to underserved chronically ill populations around the country. Taking into consideration the stress, the tension, the huge caseload, the frustrations, it still feels like home, for now at least.

And teaching new nurses? Does it still hold my attention? Yes, yet the cognitive dissonance comes in the knowledge that continuing to work forty-plus hours each week in a full-time job on top of a committment to teaching a four hour class one night each week is wearing me down. The amount of my leisure time hours spent in preparation for teaching eats away at my overall peace of mind, a consistent feeling of having "more to do" hanging in the air of my home. As much as the act of teaching is enjoyable and satisfying, doing so in the context of so much other hard work is a definite source of stress and unrest. I am currently quite clear that I will finish out the academic year at the school, seeing my current group of 23 students through to graduation, and cease my teaching activities, simplifying my life both at work and at home. If one's health and happiness begins to suffer from one's professional choices in life, one must make changes that will ease the tension and dissonance that such choices can bring.

I realize that this missive is quite self-indulgent and introspective, but remind myself that it is "blogger's license" at its self-centered best. Where else can one ruminate in an unedited fashion on the vicissitudes of one's life and career? If you made it through this rather banal piece of writing, thanks for your indulgence.

Wednesday, November 02, 2005

Sustenance

Another nursing home visit to my former patient today, a cuddly stuffed moose in hand as a gift of comfort. She is sliding down that slippery slope of rapid deterioration and escalating illness, further driving home the fact that her family could no longer handle her care at home.

While I perched on the edge of her bed, she informed me that the doctors will be putting a tube into her stomach through a hole in her abdomen through which she can receive fluids, medications and food, now that the mass in her chest precludes almost all swallowing. I explained the procedure and how this "g-tube" will work. We talked about her fears, joked a little, and she of course asked about my wife, son, and dogs. She was so happy to hear that my son is visiting us this weekend, as if she herself would be the recipient of that visit.

The love between us and our mutual admiration and appreciation was palpable to me today. This 70-year-old woman and I share a soul connection that reaches beyond the clinical into a place of utter humanity and connectedness. There is that place where souls meet and other boundaries melt away, and although it can be rare in a provider-patient relationship, the realization that one has even briefly touched that potential is enough to overwhelm one's heart with an incomparable feast of emotional sustenance.