Mi Hijo

I spent a few minutes at the bedside of my patient in the hospital today. I sat in a chair to the right of her bed and rested the side of my face on the bedrail so that our faces were aligned, her head resting on her pillow. We spent several minutes smiling at one another and looking into each other's eyes. Of course, she asked me for news of my wife, son and dogs, and I told her a story of Mary calling me in a panic this morning when one of Sparkey's nails broke off and he was spurting blood all over the house. She laughed and said "bendito!" ("poor thing").

While I was sitting at her bedside, I noticed that the site of the needle biopsy on her upper chest was bleeding through the lame little bandaid that someone had pasted there, and I alerted the nurse that she needed a pressure dressing on the area. While holding a gauze sponge in place while the nurse searched for dressing supplies down the hall, I took the opportunity to not only hold the gauze in place, but also to perform a little Reiki on my patient's heart chakra. We stared into one another's eyes and breathed, chatting nonchalantly until the nurse returned and broke the spell. In a way, though, the nurse entered our little tete-a-tete with her own caring energy as the she dressed the area more securely and placed a nasal cannula on my patient's nose so that she could have receive some oxygen. I translated for the two of them and we all had a few sweet moments as a triumverate. After the nurse left the room, I said "Are you depressed, my love?" She nodded very sadly and we were silent for a few more moments.

At times my visits to see my hospitalized patients are more social than anything else, and at other times I am advocating, cajoling, fostering communication, or simply adding my two cents based on my intimate knowledge of the patient from outside the clinical austereness of the institutional setting. This visit was filled with meaning for me on many levels.

As I was leaving the room, my patient said, "Gracias por su visita, mi hijo" ("Thanks for your visit, my child"). The way many of our patients say "mi hijo" sounds like "me-hoe"---one word, really almost one syllable in the Puerto Rican vernacular. Coming from some of my younger patients, it feels somehow strange, but from this 69-year-old woman---old enough to be my mother---a grandmother with HIV and a myriad of illnesses but with a bright light in her eyes, it's like a benediction. I'll visit her again tomorrow, and I will hold her hand when we deliver the verdict on her biopsy.

There are many ways to be an "hijo", and this is one way that sinks deep into the heart and lodges there forever.

The C-Word

Another week begins, yet I approach it with renewed energy and no post-vacation malaise. What a relief.

For those of you who were following the story of my patient with metastatic stomach cancer earlier this month (see The Language of Illness and Stories Unfolding), he's back home from the hospital and we are aggressively managing his nausea and other symptoms. Whether or not we move ahead with chemotherapy remains to be seen. He's not long for this earth and my goal is to keep him comfortable and free of unnecessary pain and suffering. Intractable vomiting and dehydration is no fun, and we've managed to put out that brush-fire for now. I stand ready for the next one.

Sadly, one of my favorite patients---a 69-year-old Puerto Rican woman (whom I see as a "free care" patient since she's too old for our program) with HIV, hypothyroidism, asthma, emphysema, diabetes, anxiety, and depression with psychotic features, is in the hospital with what appears to be metastatic cancer to her lungs from a mass connected with her thyroid gland. Previous biopsies of this mass in what is called her "mediastinum" (the upper chest area) have been benign, and I feel so badly that perhaps now the time has come where the mass has taken on more sinister and lethal qualities. An avid smoker, she goes through one or two packs a day, and a great deal of my time has been spent trying to convince her to quit smoking over the last four years, all to no avail. With her HIV and diabetes under perfect control, I have focused on her respiratory health. It is a widely held opinion that one cigarette can be the one that activates cancer cells to begin their uncontrolled growth, and this is the turn of events which I have most feared.

My connection with this sweet woman is precious. Since she speaks no English other than being able to say "good weekend" or "I love you", our relationship is conducted entirely in Spanish. Every time we converse---whether it's on the phone or in person---she insists on asking me how my wife, son and dogs are doing, and smiles so beatifically as I recount for her my son's latest accomplishments, my wife's career changes, or the dogs' latest trip to the vet. I also ask about her family, and we always close our conversations with "Dios te bendiga" ("God bless you"), a salutation which I freely share with many of my Latino patients as a way to respect their cultural practices. She carries a bright light within her, even in moments of paranoia and fear when her face is mask-like and stiff. Over the years, she has fed me Puerto Rican food, brought me countless bags of plantains to bring home to my family, and will settle for nothing less than a kiss on the lips when saying goodbye. I always comply.

Today, sitting on her hospital bed and chatting, she seemed to have no idea that we are suspecting that cancer is growing within her. I hinted that we were going to run some tests and do a biopsy, but I hesitated to use the "C-word" just yet. Her mental health is tentative, and I didn't want her to lose sleep tonight unnecessarily. When the results are in, I'll make sure that I'm present for the conversation in which we inform her of the cancer and how it has spread. For now, I cling to the very dim hope that the shadows on the CT-scan were not metastasis, and that the mass is localized and operable.

She would be the third patient on my caseload with active cancer, and the burden which these individuals carry along with their families and loved ones is great. I do my best to walk alongside them on this difficult path, but it cannot be more true that one must always walk alone when faced with mortality and death. Courage and optimism go a long way, but misery and depression certainly play their hands as well.

It is these moments of profound humanity which most engender one's humility.

Carnival Time!

For those of you not familiar with "blog carnivals", these are virtual gatherings of bloggers wherein a host blogger puts out a call for blog entries related to a given topic and interested/invited bloggers step up to the plate and submit either new or old writings. The host then posts links to all of the entries within a narrative on their own blog. Here is a link to an article which describes carnivals well.

I am pleased to announce that two of my recent Digital Doorway entries are included in the latest version of Grand Rounds, a medical carnival which "makes its rounds" every so often. I hope to host a future version of Grand Rounds in the coming year.

Thanks to all who sent birthday wishes by comment, email, or telepathy, and blessings to you all!

More soon!

Stories Unfolding

As I anticipated, the meeting at the oncologist's office this morning was pretty heavy. In attendance were the patient in question, his son, his close friend, myself, and the oncologist, a very kindly woman whose chair-side manner was impeccable.

The news was as I expected, based upon my reading of the CT-scan report and biopsy results: advanced adenocarcinoma of the stomach with metastasis to the liver, adrenal glands, and very likely lymph node involvement throughout the abdominal cavity. In other words, it couldn't be worse.

I allowed the doctor to lead the conversation, chiming in as necessary, the son and friend and I all translating for the patient who speaks less than ten words of English. There were tears, a verbalized desire for aggressive treatment, and a thumbs up in defiance of the odds so squarely stacked against survival. The doctor was very clear that surgery was not an option, and that chemotherapy---if it didn't make the patient feel worse---might prolong his life by a few months. I was very cognizant of her choice of words: months. With a cancer so advanced, survival is short-lived, and we don't talk in terms of years. There are no years left. A harsh reality by any measure.

Our meeting was classic in many ways. The patient and family members listened quietly while the doctor spoke in soft tones. A few moments after she made the diagnosis and the prognosis unmistakably clear, my patient began to cry and reached out for his son, embracing him strongly, man to man. Then he reached the other way and hugged his dear friend who was sitting on his left. Then he embraced them both and the three of them wept together. At this point, he looked up and gestured for me to take his hand. We were all four of us physically connected, the doctor quietly observing, as this lovely and soft-spoken gentleman began to digest the fact that he had been handed a death-sentence, that his body had betrayed him and was, even as we sat there, producing non-functional cells at an alarming and unmitigated rate. He began to grasp that the chemotherapy might slow the growth of the cancer but could not arrest it completely, and that the side effects of the chemo could be gruesomely uncomfortable, perhaps even deadly. All of this cascaded down upon him and upon the minds and hearts of his loved ones as we sat in that air-conditioned and spartanly modern room.

Breathing in the scene in which I was an active participant and keen observer, I could feel the expanse of the city around us, the thousands of lives careening through the streets, the myriad other life stories unfolding in that instant. It was a poignant moment of existence for me: here we were, facing death and suffering in the face, the person facing the challenge being embraced by his loved ones, the compassionate professionals observing and noting the details of the moment, present, yes, but also somehow detached.

Throughout this time, I noticed the oncologist move her stool closer to the patient, leaning in when she needed to speak of the more difficult issues. Her body language was open, her eye contact steady, her voice level and professional but compassionate. She touched his knee at just the right time, and we all sat in silence when it was needed. When the doc left the room for a few minutes of consultation with her superior, I took a deep breath and reminded everyone to do the same. Towards the end of the appointment, the supervising physician came in and made his presence known in the most gentle way. It was as if he'd been there all along. His presence was reassuring but not domineering, masculinely strong yet not patriarchal. He knew what he was doing.

When witnessing scenes such as this, perspective is the word which mostly comes to mind. That could have been me, my wife, my mother, my brother; any one of us could be on the receiving end of such a conversation, such a life-altering moment. It is profoundly humbling when one is reminded so starkly of one's diminutive stature in the scheme of things, yet also the power and focused energy which the changing course of one life can command. We are all truly stories unfolding.

The Language of Illness

I have a 64-year-old male patient with severe osteoporosis and a few other health issues like anemia of unknown origin. His main complaint has been pain which we eventually chose to treat short-term with Percocet, upping the ante to long-acting morphine when the Percocet couldn't touch it. A few weeks ago, he sat under a tree outside of his apartment building and said that he wouldn't take the morphine any more and he only wanted Percocet. This type of behavior often speaks of addiction (or at least dependence) but we gave in, at least for the meantime. Meanwhile, after grasping at straws regarding his anemia, we sent him to a gastroenterologist to see if perhaps he was bleeding internally, and also to treat his esophageal reflux disease.

Yesterday I received a call from the gastro provider that they needed to send him for an emergency abdominal CT-scan which later revealed the fact that his abdomen is riddled with cancer that has metastasized from his liver to his stomach, adrenal glands, and lymph nodes. Now his pain makes sense, although his symptoms were always vague (and we were worried about Percocet dependence!). My, how things turn on a dime.

Now the game-plan has changed and I will accompany him to an emergency visit with an oncologist tomorrow. I don't look forward to the look on my patient's face when we hear what I expect to hear: that the cancer is already profoundly spread throughout his abdomen, and the chance of curing him is almost nil at this juncture. I can see that we will be stepping gingerly onto a new path of palliative care as he begins what may be a very rapid decline. His stalwart friend and advocate will be there with us tomorrow morning, and it will be up to me to translate all of this new information---literally and figuratively---into something that my patient can grasp.

The language of illness and death can be harsh and forbidding. My job is to distill it into digestible syllables and be there to pick up the pieces of grief. All in a day's work, I guess.

Mixed Bag

As always, work is certainly a mixed bag these days. On the one hand, I had the wonderful experience the other day of reminding a patient that he has now achieved five years of having his HIV fully suppressed with no detectable virus in his blood (based on the most up-to-date assay that we have, anyway). His determination and desire to be healthy have kept him on the right road and now he is reaping the benefits. I explained to him how we can now view his HIV like his diabetes---a chronic illness controlled with medications and a positive lifestyle, with the goal of avoiding as many long-term complications as we can. As more and more people with HIV age, we will begin to see the data regarding how they fare as their bodies begin to go through the ageing process. We still don't know for certain how infected people of very advanced age will do in the long term, but it looks like we may have a chance to find out over the next few decades.

On the other hand, there are patients who never quite "get on the bus" and we track the slow and inexorable progress towards their eventual demise. There's not much to do in many of these cases except to be there when they crash. Then there are others who simply have lives too dysfunctional to fix, patterns of behavior and learned helplessness just too entreched. It is some of these individuals who can make a workday miserable.

Aside from the patients themselves, paperwork, organizational issues, the healthcare system itself, and other factors all combine to make the providing of quality care a challenge. Not everyone has the same work ethic, not everyone cares as much. And when money is the bottom line, everyone suffers.

Yesterday, we heard that an amazing doctor specializing in HIV in our community died of a heart attack while swimming from one island in Maine to another to raise money for an AIDS-related organization. Her loss is a shock to the community, especially since we lost another local HIV expert to suicide two years ago. When the healers die, those who rely upon them are stopped in their tracks. How many people see their doctors as something other than mortal and fallible?

Next week I have the entire week off to celebrate my birthday (41!) and soak in some of the final days of the summer before Labor Day heralds the beginning of school and that September feeling of renewal and change. In many ways I look forward to the autumn: the crisp air, wearing a jacket on the cool mornings, getting back to teaching on Thursday nights as the summer wanes and the leaves begin their transition. The end of August also heralds the beginning of the big harvest time when the abundance of autumn graces the land. As always, there is much to look forward to and cherish, and the mixed bag is just a fact of life on this awkward and lovely physical plane.