Tag Archives: family

two stem cell and bone marrow registration drive possibilities: please share

Please share these dates:  6/28 and 7/12 when folks 18-44 can register to register to be stem cell or bone marrow donors if a match is found.  The registry needs you!

Those 45-60 can register on line. Please check out information on bethematch.org regarding what this means!  The registry needs you. A cheek swab and a willingness…

Here is the thing: 97% of whites find a partial match.  65% of African Americans do. Other ethnic groups are lower than Whites and barely higher than those of African descent.  For a full match: 75% whites and only 25-35% of those of African descent.  Others are in between. Diversity in the registry is key. The sites for the drive are because they are diverse, inclusive, and social justice minded.  Please come by.

Feel free to share the fliers

Thanks! Sharon

Matt Dobie Immaculate

Matt Dobie St T

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Teams, gratitude, and goodbyes

We had a lot of fun in our hours together in the Labor and Delivery Suite at Virginia Mason Hospital, Seattle, from 1983 until 1989, when I left to take my practice to the University. “We” would be the nurses, midwives, support staff, and doctors from the hospital and two community health center practice groups. There’s a lot of talk these days about teams, as if it is a new concept. It’s a great concept; it’s not new, and algorithms,mnemonics, and organizational protocols telling us to communicate or how to communicate do not make the concept come alive. Relationships are the bricks and the mortar comes from commitment to our patients and to the relationships within the team.

This spring a new patient appeared on my schedule. I recognized the name and I recognized her: big eyes, easy laugh, and organized notebook with items for us to discuss as catch up­—items she felt I would need to know if I was to become her primary care doc (PCP) and we were again to be a team. It had been 25 years since we had worked together as nurse and doctor in Labor and Delivery (L&D is what we call it), yet it could have been yesterday.

…Only this time we would not be working together with a laboring and birthing woman and her family. It was to hopefully keep her healthy, now in remission after chemotherapy for lymphoma. Her cancer care was in our institution and she and they felt a PCP in our system would add to her team that included her husband, daughter, oncologists and nurses; they hoped my joining the team might make her care coordination easier.

After she had completed chemotherapy, her first scan was negative and she and her husband and daughter were optimistic and ready to celebrate. I felt like an old friend had walked back into my life. I shared her optimism and thought, “how lucky am I? Piece of cake: reconnect with an old friend, work on her health goals now that chemo is over…”

That is what teams do if they work: they breed strong ties and create a choreography that could translate to different settings even though we don’t make those translations often. In this case, we settled in, started to work on some of her non-cancer concerns, caught up on her life and hoped for the best. I found out she had left L&D nursing and was a respected nursing educator in a local program. She and her husband had one daughter and she shared how proud they were of her. She told me how, as their daughter grew, they took frequent outings to various parts of the state and usually could be found in the summer crabbing in Puget Sound from their boat. I remember their wedding and could picture the next installments as she relayed the details. Did I go to the wedding? Or were her descriptions so vivid I feel in my memories like I was there? That is the thing about teams. We all own part of the other’s story with a connection that weaves in and out and in an out.

During these conversations I could easily transport myself back to L&D, day or night, someone in labor, sitting around with whoever was there– nurses, the midwives from the hospital midwifery group, maybe one of the family med docs from the other community health center group, maybe the obstetrician on call. If one of us needed help, there were always hands to help. If a woman came in and her on call person was not there, we would help. If my patient came in and I was not there yet, others would help.

What I remember about Linda, the name of my colleague now patient, is her voice. She could tell one of us exactly what she thought and what she thought we should do about it, always with this cadenced softness that did not hide the direct and clear opinion. She could (and would) manage a complex patient in the midst of chaos with the calm of a neurosurgeon and she could coach a reluctant woman when to breathe and how to push when I needed to take a take a deep breath break myself. And laugh…oh I can hear her laughter. She could laugh at herself and funny things she would share. Laugh a lot and laugh loudly, easily tickled by life and our work, easily finding what was important, never disrespectful, just keenly insightful to the meaning, the amusement and the delight—all of it.

Teams…they do create memories. I don’t remember a mnemonic. I do remember the people who touch me and allow me into their lives. Though I am not sure, as I remember the flurry of the nursery filled with the L&D and pediatric nurses and my absolute excitement and disbelief at the show of support, to say nothing of the import of the moment, I believe Linda was right there when my son was legally handed to me at our hospital and again at the shower the nurses had for my son and me a couple of weeks later. I know she celebrated my becoming a parent, and we all shared her meeting her Larry and her wedding a short while later. And then we lost touch.

This spring of remission was short. Her lymphoma was found again, not even hiding very far from her oncologist’s detection. Her remission had not been real. She had more chemo and prepared for stem cell transplant. During that time our biggest conversations were about how to get ready, would she have to live closer to the hospital during this treatment. And she began to accept these realities and in her usual very organized way, she set about making all the arrangements.

Just a couple of weeks ago, with her port in place for the transplant, she was admitted with a fever. We hoped it was an infection, maybe the line that had been placed. Her doctors tried to hope and did cultures and started antibiotics. Within a couple of days, it was clear. No infection. Her cancer was running wild. Her oncologist gave her the news and we expedited her return home with her daughter and husband and Hospice, her new team member.

Her bucket list got much shorter. She had a couple of good days and her family was at her side pretty much the whole time. Before her discharge she told me she worried about the strain on her husband and daughter and I told her they were strong and would be fine. She said, “but I have things to do.” I asked her where she would tell me to put my energy if I knew I was going to die the next day. She laughed. Oh how I loved her musical laugh. She said, “You give me perspective. And also, I really want my daughter to go on her trip.” I said, “That is not your choice.” She laughed. We both knew she would have said the same to me.

I thought she would live a week or three. And I hoped to visit her and maybe have the courage to say a proper good bye and to thank her for the days and nights we passed together in L&D and for trusting me with her care at this momentous time. She died quietly, 5 days after going home, with her family at her side. When there is a good team, maybe there is no good way and no need to say goodbye.

happiness moments

For my birthday (11/5 if you want to remember it in the future) my son gave me The Happiness Project. by Gretchen Rubin.  I thought it was an intriguing choice.  With respect for him, I won’t spend words talking about the personality styles of my sons.  What I wondered was whether this was something he thought particularly appropriate for me or was it a projection of his sense of self.  Fairly soon after giving it to me, he checked in. “So how is the happiness project going?”

That makes the question clear, right?

I have been formally and informally evaluated (by numerous bosses, co workers, students, residents, and patients) as being serious, but with a very in tact sense of humor.  I have not been evaluated as seeming unhappy. OK if you asked the 7 full or interim chairs of my department if they think I am happy, I confess I have no idea what they would say or what their criteria might be.

Do you have a clue whether your bosses, your co workers, your friends, your family think you are happy?  And if you drew a line from 0 to 100,  0 being morbidly depressed and unhappy and 100 being ecstatic all the time, where would you rate… self rating or by others? I admit to a slight bent towards paranoia since getting the book, wondering how many, like my son, think I will benefit from a happiness project, well any more than any of us could. ( i think we all could, but not at the expense of that which drives us to seek and work for a world that is better…OK, I think it is how to have both.)

I am reading the book.  There are great tips.  I like the “enjoy the now”, “sing in the morning,” and many more that challenge me.  Others I do, routinely.  And I guess I am glad.  Think of the Eeyore my son would think I am if I were not generous, open to people’s feelings, looking for ways to be off the path, collecting (ok very small that way…two means a collection).  I do sing, not in the morning.  I need other voices around me to find my part and I don’t have other voices with me in the shower, not that I am opposed to it, just is not there. I think I have done a good job at stop nagging.  As for not wanting appreciation: I plead I am human. OK, I will take it on…not being a martyr in the not wanting appreciation, that is hard.  I am human.  It is a work in progress. I am a work in progress.

Write a novel? Forget about results? OK.  I have not written a novel.  I have written a manuscript.  And I cannot forget about those results.  I am carrying the stories of many people, including the 30+ contributors to this work, and feel a responsibility to bring it to print.  These narratives need to be shared. What shall I do next to get it there while waiting for replies?

Happiness…I think I have it a lot of the time and it is multi-tasked with the things that weigh on my mind: things out of sync with my values and yet realities at work, my kids’ health and challenges, the fears of waiting for the other shoe(s) to drop, and wanting this manuscript to become a book.  In the meantime I will read and find those tips in The Happiness Project that can grow me and maybe reassure my son that I am not Eeyore.

Tribute to Stan

Stan is the person in the piece below.  His impact on my life opens and closes a chapter on those who bring joy to our lives in the yet to be published work, Life Lessons, What Our Patients Teach Us.  I edited those two pieces to be one narrative, the one I submitted to the PNWA literary contest.  On this day after Thanksgiving, I remain happy for our friendship.

 The Caregiver

      “There is a Mr. Dorfel to see you in waiting room,” was the overhead page.  I was finishing notes from my morning clinic, but went out to greet him in our empty waiting room.  As soon as he saw me, he jumped up, same plaid flannel shirt, dentures clacking, toupee askew, and wrapped me in a big hug almost dropping the several rubber-banded bundles of papers he clutched in his hand.  “Dr. D, we need to talk.”

            Hugh and I went way back.  He had been my patient at the community health center, and he briefly followed me to the university medical center when I left the clinic and changed jobs. When the university billing style and increased cost became more than he cared to manage, he had returned to the health center for his medical care.

            As his doctor at the health center, our relationship had a rhythm: six months (summer and fall) of fairly frequent visits for his high blood pressure and preventive care and six months (winter and spring) of physical absence when he would escape to Mexico with its lower cost of living and warm winters.  When he would return, his line was the same.  “You know Dr. D, I would stay there all the year, but as you know, yours truly does not take that heat.  And Seattle is dandy, but on that medicine you give me, my hands are just too cold for the winters.  And Mexico is just marvelously wonderfully inexpensive,” he said, drawing out the marvelously like someone from the upper west side talking about last night’s gala.

            His Mexico months were punctuated by long, rambling, and usually tangential letters, handwritten or typed on the old Royal typewriter that he hauled back and forth between Mexico and Seattle.   He wrote on the politics of the day, his days in Mexico, my doctoring, stories he read in the New York Times, and other topics on his mind. A diehard liberal and pacifist, the envelopes carrying his letters always had several New Yorker cartoons folded inside.  Regardless of who was in office and how critical he was of the moneyed interests, he would pepper his long monologues about the state of the world with his belief in the goodness of some, also always asking after each staff member’s and my children’s health followed by many repetitions of “and give my hearty best to them.”  Hard to read in his scrawling hand and sprawling grammar, we would pass the letters around, and amid laughter and delight, we would each take a turn at trying to decipher the hand writing and to translate the run-on sentences into some sort of comprehensible message.  We all knew another autumn would come and Hugh would be back visiting the clinic and stopping at each person’s desk to compliment everyone he encountered.

            When he was in Seattle and still had his apartment, he would take the bus daily to a post office all the way across town where he kept his post office box. 

            “This way,” he said, “I can see all my old friends all over town.” 

            These old friends included the bus driver, the regulars on the city bus, and his favorite grocer where he bought bags of fresh vegetables and grains every day for cooking in his main utensil:  his pressure cooker.  He befriended everyone.  Hugh stated several times, “If I can make someone’s day brighter, why not?”  He often told me what a good person I was, whether he was referring to my doctoring, my mothering, or my personhood, and he was generous with these acknowledgements for pretty much everyone he met along the way. 

            One of his favorite refrains about his health went something like this: “You know I should be dead.  When I was thirty-five, that one doctor told me that I would be dead by the time I was forty.  You know it was (and, by the way it still is) that high blood pressure of mine, through the roof, but I told him it’d always been that way and you know it’s still that way.  It’s just me, blood pressure always bouncing all over the place. And here I am, still kicking.  Who would’ve imagined?”

            Yes, there he was in my office that day: close to 80, his toupee even more bedraggled than the last time I had seen him, with hardly any worldly goods and reasonably good health, other than his high blood pressure and formerly large prostate, which he loved to tell any listening audience was the largest his surgeon had ever removed.

            Most of us have some optimists in our midst. How many of these patients know their effect on us?  My clinic day is scheduled with appointments every few minutes.  In some specialties, an initial consultation might be allotted more time, but for most of us, wherever we are caring for patients, the pace is quick.  A first look at the schedule before starting a clinic gives me a sense of whom I will be seeing.  Sometimes that glance can open a floodgate of feelings ranging from anxiety about not knowing enough, to distress when seeing a challenging patient on the schedule, to delight when certain other patients are scheduled.  There really are those patients, like Hugh, who quite simply brighten my day.  These patients are just as likely to have major illnesses and some of them are dying when we work with them.  Even then, some people experience life in ways that transcend what is difficult —and it is contagious. 

            I was delighted to see Hugh that day when he appeared, unannounced, in my clinic. I had not seen him for over two years and suggested we get lunch. 

            “Doctor D, I need you to be the executer of my will,” he said, producing a card from that rubber-banded bunch of papers and handing it to me.  “I have this attorney, see it’s right here on her business card, and she says I need to name someone.  I won’t ask my kids.  I don’t have anything to do with them.  And I can’t ask my apartment manager as much as I know she is a great gal. You are the only one who can do this.  It should not be any work.  Really.”  

            From there he rambled on about his latest six months in Mexico, how his blood pressure was doing, and he reported on the health and welfare of the my former co-workers at the community health center. 

            “And how are the boys, Mr. Matthew and Mr. Nicholas?” he asked, always attentive to hearing how our family was faring.  During occasional pauses in his monologue, he polished off his bowl of hot and sour soup without ever getting a direct answer from me about his request. Instead, I asked him to come meet me again in a week.

            It had been years since I had been Hugh’s doctor, and I knew his social situation.  As his doctor I had never succeeded in getting him to tell me about or deal with his estrangement from his son and daughter.  At our next lunch, I agreed, conditionally, telling him, “This can only work if you stay in touch. I can’t have you here or Mexico and have no idea where you are or how you are doing.  You have to become like part of our family.”  

            He dutifully stayed in touch with those long letters when he was in Mexico and soup dates when he was in town. After several years, Hugh’s health declined. I helped him find assisted living and we packed up his apartment, all of two suitcases of clothes and personal items, a small table and chair, two boxes of books and his papers, his Royal typewriter, and a few kitchen items.  We recycled 16 brown grocery bags stuffed with the plastic bags that had held his vegetables and grain, and he relinquished his pressure cooker. 

            “Don’t expect me to learn how to use that microwave thing I now have instead of a stove, Dr. D.  I had one of the first automatic cars in the country because yours truly could not learn to shift with a clutch. See this?”   he said, swinging his can opener around his head.  “This is my third like this.  You can’t even find this kind any more, except at Goodwill, and I can’t use the new kind, and I am not talking about the electric new kind.”  

            His Mexico jaunts ended; my sons got to know him better and he became a more like a member of our family.  We would visit him, shoot pool in their recreation room, and carry on about the state of the world, and he would come to our house for special occasions.  Several hospitalizations and a number of years later, he moved to a skilled nursing facility where he lived until he died.  

            In those last and nursing home years, Hugh became the hat man.  In his sixties and seventies, he had worn that toupee which aged into his 80s, becoming increasingly worn, dirty, matted and infrequently shampooed.  During one hospitalization, his nurse supported my ultimatum, “lose the wig and be happily bald, or buy a new wig.  This one is a rat’s nest and is going in the garbage.”  With flourish, I threw it in the trash and he acquiesced.  He gave up the toupee and never replaced it.  Instead he donned hats.  Always a bit unusual in his dress, and willing to be flamboyant, he started accumulating baseball caps, beanies, and hats for each occasion.  He had a witch’s hat, a leprechaun’s hat, a Santa hat, and a pinwheel hat.   On my visits, I would catch him, scooting up to the desk in his wheelchair, up to three hats on his head at one time, and smiling at the nurse, turning to me, and saying, “This is my friend, Martha, and she works so hard and is the best nurse here.”  Later he would tell me, “We need to show more appreciation for the staff here.  They work so hard and people are always complaining.  I don’t know why they have to complain.”

            This man brought a smile to my face, whether I was seeing him in clinic, reading one of those quirky barely understandable letters, picturing him heading across town to get his mail or across continents to Mexico, watching him interact with nursing home residents and staff, or sitting at our dining room table. 

            He took me aside on one visit to discuss another idea of his.  Though he would have virtually no money left when he died, his wish was to give his little reserve fund to the health center where he received care for over 20 years.

            “I want you to give what’s left to the clinic staff so they can have some relaxing times,” he instructed me.  “They do so much.  Do they ever have time or money for a party? You give it to them when I’m gone.  Tell em how much they mean to me.”

            “Hugh, why wait until you’re dead!” was my immediate reply.  “I think you should give it to them!”

            “Doc, I’m not much for speaking in public; I don’t think I could do that.  You just handle it ok?”

            “Look,” I rolled my eyes.  “Your speaking ability is not the point.  I would like you to see how much you touch them and it will mean a lot to them to have you give it to them.  I’ll take you.  This is not like learning a new can opener.  If you can’t talk, I will help, but this is your gift, not mine.”

            Finally I convinced him to give it to them while he was still alive.  He and I went to a clinic staff meeting for the presentation. 

            “You work so hard, too hard, and I want you to have some time to take it easy, relax, just have some fun,” he told the staff, his voice cracking and tears streaming down his and many others’ faces.  The standing ovation honored the caregiver in the room.small Stan and Allie

 

 

Single Story continued

It is the night before Thanksgiving, and here I sit eating potato chips and promising myself a glass of wine when I finish this post (neither of which is good for my blood pressure or my cholesterol, speaking of the choices theme), needing to make stuffing and cranberry sauce tonight, shallots and brussel sprouts tomorrow,  one son downstairs viremic, the other just here from SoCal out on the town, and me, trying to sort out what has been swirling in my mind.

What to post?  Oh yes, and Allie the aged dog is scratching at my study door.  If I let her in, she will whine for attention.  If I don’t she will not go downstairs and bug the 25 year old. I could post about how my sons already see me as a daft old woman.  NO that is for another day.

Keeping it simple, I’ll stay with the theme of the single story.

I have a lot of friends who are anti military. I don’t agree with many of the actions we have taken in the world either.  And I want there to be more than the military as paths towards maturity and upward mobility available to poor, struggling in school, and minority youth. If it were on an equal footing with college, vocational training, being an entrepreneur, and if it did not involve a higher risk of dying, well, I might feel differently.  Point is, as I see it, though  no country is without a military.  So I’m not going to dis its existence; it seems to me it has to be.  I have many thoughts about war and its consequences and about our politics that have led us into war, but that too might be for another day.  I do accept that we will have a military. Do I want my kids choosing it given the recent decades of engagements?  no. Would they have my support if that were their choice?  A reluctant yes, because I do not live their lives.

Second point is:  how do you see people in the military?  Regardless of your political positions, how do you see them?  Do you have a story for the soldiers? the marines? the navy? the enlisted vs the officers?  the policy makers vs those who follow the orders? How does it break down for you?

I suspect many of us have a single story, whether it is pro or con.

Try to put yourself back to the early 1950s.  Picture a navy ship, a destroyer.  Ship and MascotIt’s during the Korean conflict.  Many if not most of the sailors on this destroyer are 18-20 years old, their first time away from home.  Sure, they had their basic training, but this is really away, three months “at sea.”  There is a captain of this ship.  His job is to get them to the part of the Pacific where they can do what the Department of Defense tells them to do.  It is a war in the eyes of the US Government and the military.

Draw a picture in your mind and start with the story of these young sailors and life on the ship in the middle of battle.  Do the same for the guy at the top, the captain.  His job is order, following orders, keeping everyone on task and the ship afloat. Maybe jot down your thoughts.

My father was the captain, in his thirties. dad3 Fast forward to 1969, and he was in some major position and stationed in Newport RI.  I could not drive my car on base (where my parents lived) with my anti-Viet Nam war stickers on my car. People hearing I was raised in the navy often gave me a single story: how I could come from that family?  They gave my dad a single story:  military brass are authoritarian and militaristic. On the other side, some could not understand the complexity of my beliefs. I was not anti-American  The contradictions and the huge space between two absolutes are sometimes so hard for people to handle, when in reality they are what define and embrace us all.

How could my father, this person who was in Pearl Harbor when it was bombed, on the USS Minneapolis when it was torpedoed, losing many men (and limping into a harbor to rebuild the hull out of bamboo and sailing back to mainland) be anything more than a true military man? How could he then go on to serve in both Korea and Viet Nam and not be locked into one view? Both ends of the spectrum would see it that way.  Do you inhabit the ends of the spectrum? And how many actually do?

I have many stories that round him out to the complex person he was. He was a true military man who loved his profession, not war, his profession—and he was more.  A few years ago, some of those 18 year old sailors, now in their 80s found my sibs and me.  One shared a letter that his parents had saved, sent to them back in those Korean War days.  It is below and I hope it shifts your lens from the picture you had. If you click on the image, it should enlarge so you can read it. As we approach Thanksgiving, my hope is that we all will be thankful we have the capacity to use our lenses to be wide angled.

Untitled 2If you missed it yesterday, I still recommend the talk by Chimamanda Adichie.

On Keep On Keepin’ On

While swimming this morning, I was thinking about these recent weeks.  They mark the anniversaries I mentioned earlier in the week and my father died this week 17 years ago.  My brother-in-law died last month and a friend (the dad, grandpa, father-in-law, and husband to close friends) died this month. Swimming is a good place to be with myself, quiet and undistracted. From reflecting on the lives of those on my mind, I moved to questions about how we live.  How is it that we keep on keeping on? that we get up and keep going? I alluded to it in yesterday’s post.  It is more central on my mind today.

Two strangers suffered a similar loss.  https://i2.wp.com/www.griefland.com/wp-content/uploads/2012/09/GrieflandBigSur1.jpgArmen’s son Alex and a few years later Nancy’s daughter Rachel died.  A mutual friend introduced them and Armen became a guide and mentor with Nancy after Rachel’s death. As they wrote and exchanged thoughts and feelings, each was drawn deeper into this land we call grief.  They became close friends and  their writings became a book I recommend you buy: Griefland: An Intimate Portrait of Love, Loss and Unlikely Friendship. 

Nancy and I had corresponded in a web-based support group over the few years before Rachel’s death. In 2009, I showed her a picture of a doll I made in a workshop based on the work of Marita Dingus.

my dragonfly

I did not have knowledge of some cultures’ beliefs about dragonflies when I put one on my doll, but I liked it even more when I learned the symbolism. Nancy asked me to make a doll for Armen as a thank you for her presence in Nancy’s life.  She mentioned she would like one too.  They each sent me a few items that were meaningful artifacts in their families. Nancy wanted each to have a dragonfly.

When the dolls were complete, I explained them to both women:

Armen, I have never met you.  Your friend Nancy describes you as passionate, a gypsy at heart, deep, powerful.  She asked me to make you a dragonfly doll and yours is my second in a series of three.  Thank you for shepherding and sharing this journey with Nancy.  Having held the artifacts you gave to Nancy, there are ways I feel I know you.  When I look at the photo of earlier days, I see the connection among the four of you. Your traveling cross and your passport express other components of your spirit.

I imagined a wild gypsy for you at first and the picture that I had df5in my mind was actually the doll that I made.  When I look at your veiled dancer now however, she looks more subtle and gentle. She is the gypsy, the carrier or holder of your story, as much as another could represent it.  She is clothed in layers that can swirl or hide.  She is complex.  If she is a carefree gypsy, she is also a tender soul who can hold much in her softness for those whom she loves.  Your dragonfly is made from Swarovski crystals.  Crystals should refract light to show a rainbow: many colors, many symbols in many cultures.  dragonfly1Your doll would embrace the variety, which for me mean life and hope and beauty.  When you look at the inside of the cape, it becomes obvious that the story is yours.  The cape is held down, weighted, grounded by the two beads that are bone, raising your friend’s question of where do the bones go?

The lizard on your shoulder is for Alex, who loved lizards. The mother and two children: Danielle and her two and of course, you and your two, all linked to each other.  The ring is for your many years with your husband. The weights at the edge of the cape are also for your connection to writing, to Setrakian and Sorayan.  The key, from Rachel, is what keys are, both the means to open and move through, and also the reminder that we do not have to do these walks alone.  You are the living demonstration of this in your friendship with Nancy.

The heart is within the key; no key functions outside of our hearts. There are two word notations, “peace” and “&”.  You live in words; may they bring you peace. The “&” is an inclusive word.  Your cross is of course for your travels, and for my wish that many jeweled adventures lay ahead.  For this walk, you need boots; Nancy felt shoes were a key symbol for you both.  That they are boots is my touch: they do work, they touch dirt, they kick when necessary.  There is a bit of imaginary cowgirl in me.  We also share the material in your doll’s veil; my doll has the same fabric as a cape.  Both yours and Nancy’s dolls have the same fabric in their capes, reversed.

Nancy, your doll is the Lady in Red.  df2This was your stretch, and for us, always remembering to stretch will help keep us sane.  That we have never met is really rather amazing when I think about our connection.  Making these dolls was a treat for me. Because of your request, I could know you better.  Your dragonfly is like an amulet, a shield, beaded with the colors of earth and fire, the counterpoints for this insect that lives between air and water.  It is fastened with the button from your youth, because those years are the template from which you have grown.  It emerges from your paisley fabric, linking you further to your past.  It is fringed to represent a talis for whatever form your spirituality takes.

df7As with Armen’s doll, the inside of the cape is where your family tree lives, showing that the doll is the keeper of your story.  I picked a quote from Saroyan’s book Where the Bones Go, because really, this project came to be in large part because of Rachel bringing you to Armen.

Your dragonfly doll is regal and proud and unbound.  She strikes me as a protector who can stand tall, feel everything, living in her domain, not constrained by tradition or dictum. df4 Jessica’s cameo is on your skirt.  Do you and Jessica know that cameos are seen as a vow of love, sometimes given to travelers? Josh’s Aztec cross can be another talisman, protecting you from evil.  Rachel’s Mama Bear icon became part of Rachel’s key, because how she saw you and your heart will be part of your discovery as you use your key.  The beads then encircle you and thread connects the three siblings to your heart.  The heart on your doll is one from a pair of earrings; the other one is on my doll,  as our hearts are linked.  And of course, there are two keys; you have one and Armen has one.  Your word is grace.  You also live in words and your journey is rich with grace. The “&” is inclusive; do you remember in seminar hearing how “but” negates and “and” expands?  You told me shoes were very important.  The boots are my touch.  Boots do work, they walk through shit, and they kick when necessary.

Other Side of the Bed

Luckily I have not spent much time truly on the other side of the bed as a patient. And those moments have been brief, though worth being snapshot vignettes in this post.

There was the time at 18 years of age that I had surgery on my tail bone. When I went to the post operative exam, the surgeon had three medical students shadowing him that day (males all of them, not much older than I). The nurse put me in a room, noting I had sweat pants and a t shirt on and would not need to change to a gown.  When the surgeon and his students entered, there was a brief exchange:

“How’re you doing?”

“I’m fine.  Can I go back to work?”

“”Well, let’s see, bottoms up!” he exclaimed as he tipped me into leaning over the exam table as he pulled down my sweat pants, exposing my surgical incision (and buttocks) to the students. To this day I wonder. Was he doing a bravado thing for the students? Was it an attempt at funny, with me included and not as the object?

A few years later, when I was in grad school, I was hospitalized at UC Berkeley with a pneumonia. I was 21. Thought to be a bug called mycoplasma, the treatment those days was tetracycline.  That stay was notable for several things.  Because the hospital was right on campus, friends could visit at all hours- and bring me things I needed, like cigarettes.  In those days the only reason I could not smoke in the room was because I was on oxygen.  Can you believe it, pneumonia and no policy against smoking?  You could often find me leaning out the window with my oxygen off, having my smoke.

While there, my face, arms, chest and back all broke out in the most amazing case of an acne like rash.  It hurt, it burned, and it itched.  None of the doctors seemed concerned, though they would say “Hmmm, I wonder”  or “Hmmm, have you been sweating a lot when your fever breaks?” I was  a relatively compliant patient (other than the smoking), sitting there, taking what medicines they gave, asking very few questions. There were also had medical students on a “student health” rotation from UC San Francisco.  One day, in came the attending doctor, white coat pocket’s full of papers and gadgets. With him were 5 young men.  Yes men…few women yet.  They had on short white coats, with pockets stuffed more that those of the attending doctor.  By the time of this incident I was very close to the same age as them.  Most medical students went straight from college into med school.

They circled the bed with the attending at the center looking at me from the foot of the bed; the students, two or three to each side, were at his side with “What new exciting thing will I learn” expressions on their eager faces.  I, the specimen, was asked to raise the head of the bed and sit up.  This was not hard (I mean, really, I had just been at the window, hanging half way out to satisfy my nicotine urge).  I complied.  While they did not have beards and those big white collars, I could not help but think of Rembrandt’s The Anatomy Lesson of Dr. Nicolaes Tulp.    I almost laughed out loud.  If I had any inkling I would be heading for medicine, I might have been more understanding, but no, I was going to be a social policies person, community advocate extraordinaire. So these fellows amused me with their devotion to, well I was not sure what.

As the attending spoke about my case with words that were at that time a foreign language, he reached across the bed and with aplomb, he pulled down my gown, dropping it at my waist. There I was, sitting, at age 21, bare breasted with this horrific acne like rash, facing these eager students and their teacher as he lectured about my skin condition, tying it to the fevers and sweats I had in the previous days. This monologue was probably only a couple of minutes. It felt like an eternity.  I sat there dutifully.

We teach differently and hopefully our students and residents know to attend to patient comfort.Knee Device_2

This is me, 2009, fractured tibial plateau, post repair by a surgeon who held my hand while they put me under anesthesia.  I cannot tell you how much that meant to me.

Knowing that there is so little I can know about another’s experience is one thing; life reinforcing that knowledge hits it home.

All the time, I start patients on lisinopril and other medications that are called ACE Inhibitors.  Some significant proportion of them come in saying, “Change it. The cough is unbearable.”  When they say “cough,” I am all over it.  I change their medication to something else.  I ask questions about the cough to convince the patient and me that the cough is not from an illness rather than a side effect of the medication.  I ask about fever, cold symptoms, smoking, sputum production, timing of the cough, things that make it better and worse.  Inevitably the patient has stopped the medication and the cough has vanished, poof, just vanished. That’s enough for me; I suggest an alternative.

This past month my doctor and I have been discussing my blood pressure.  From the 14 hours I could tolerate the 24 hour blood pressure monitor, it was clear.

OK first, to any of my patients who I have subjected to a 24 hour blood pressure monitor, my heartfelt apologies.  I thought it was a nifty high tech device that silently and unobtrusively recorded blood pressures as the day went by. NOT.  It is a clumsy cuff with a big fanny pack to be worn.  I was more or less ok with that.  BUT it beeped every time it was going to take a blood pressure, leaving me explaining it to co-workers and then awakening every 20 minutes during the night, to finally throw it across the room at 2AM. I thought I would have a hypertensive crisis from wearing the thing.

My results were clear:  to manage my blood pressure all I needed to do was not work and spend a lot of time in bed. I like that idea, but I could picture the bills mounting, so opted for a very tiny, almost homeopathic dose of lisinopril, 2.5 mg for any of you who might be in the guild.

Sweet, I thought. Days 1 and two went fine and I even remembered to take the pill.  I was getting over a cold and was not surprised by the occasional cough.  (For those who do not know me, I do not any longer hang out windows smoking; I quit 28.5 years ago, but am sure, when I have a cold, that my lungs remind me of those days.) Then came day three.  At about 1030 that morning I felt a tickle in my throat.  No big deal.  A tickle is a tickle.  Thing to do: clear my throat.  I coughed once and went into this several minute spasm that went from gasping for air to wanting to reach down and tear the tickle from my throat to knowing that some more coughing would not solve it. With a drink of water, it settled down.  At 2PM there was a repeat, and again at 5 and 9PM.  The next three days were no different.  NOTHING prevented them; this was like nothing I had ever experienced, even in my smoker’s cough or whooping cough days.

I stopped taking the lisinopril and still need to tell my doctor.  That very weird cough is gone.  The real test would be to take it again and see if it has come back.  I actually have suggested that to patients with whatever med they are not tolerating, to prove to them (and me) that it really was a side effect to the medication.  I did that with tetracyline.  Guess what: same rash, I am allergic to it.  With this lisinopril, I am not sure I want to take my own recommendation.

What I cannot believe is that I have never really understood from what patients described to me that this cough is really beyond annoying.  There is no way I could see patients, teach or even concentrate with it!

The last of recent lessons has to do with cataracts.  I have probably had over a thousand patients get cataract surgery, almost all very very happy with the results.  NOT ONE has talked about the 5 weeks of 4 times a day drops (four different ones, spaced 5 minutes a piece) Have you ever tried to do something and know that in five minutes you have to do drop #2 and five minutes after that drop #3 and after five minutes later drop #4…only to repeat 4 times that day? That requires a lot of focus.

And not one person talked about the challenge of how do you see when you cannot get your new prescription for six weeks?  My surgery on my right eye was a piece of cake.  For the first time since age 13 I can see 20/25 without glasses.  Cool. Here’s the catch!  I cannot read anything out of it.  If I put on my glasses, my left eye is happy and can see mid, far, and near.  For my right eye nothing is right. I have to wait six weeks to get that script. If I have my glasses off, my left eye is not good at near, mid, or far distances, but my right eye can see far.  How did I not know this from all our patients?  I am fine.  My brain has adjusted and luckily I have not had a complex tear to repair for a woman having a baby or other need for both eyes to work together.  Tomorrow I get a pair of glasses that will be right for both eyes until the left eye is done and then I will have six more weeks.

To my patients:  I now know better how to ask about your experience.  And I celebrate your resilience and how your carry on and adjust, regardless!