Letting death in the room.

Taken by the author. Mukwonago, WI. Oct 2016.

One of the most heart-wrenching things I witness at work is people saying goodbye to their loved ones. Today I watched a husband say goodbye to his wife of 31 years, with their son also present at bedside, weeping as his mother died.

I stay in the room for all terminal extubations, along with the ICU nurse and the respiratory therapist. It's always an emotional thing to witness; I think we all find some kind of unspoken moral support in having each other present, besides the obvious practical needs to be there (RN to give meds, I provide orders/ explain things to the family/pronounce/ask for autopsy, RT weans ventilator and removes the endotracheal tube).

I stood in the room and watched the RN bolus morphine and midazolam...I watched the patient's respiratory rate. I watched her face for signs of struggle, her body for signs of stress. There were none, so we were ready to let her go. I gave the final "ok" to the RT to remove the woman's endotracheal tube, as I thought her respiratory rate and sedation level were adequate so that she would not struggle without the ventilator's assistance (pressure and oxygen). Her sats dropped to the 60s immediately once she was on room air, she developed circumoral cyanosis, and her heart rate was dropping. The medical staff all left the room so the family could alone be with her. She lived for about one hour after extubation, deeply sedated, and died without any struggle. I returned later to pronounce her death (1250) and obtain autopsy consent from her husband. He readily consented and said she would've been an organ donor, if her cancer hadn't prevented her from doing so. He asked "What will your team learn from doing an autopsy?" and I explained the top clinical questions that I thought could likely obtained only via autopsy.


In the moments before the medical team goes into a patient's room to do a terminal extubation, there's often a collective "let's do this" sobriety. As in "This is hard. But, we will do it, and we will do it well." And we do, our team always does. Unfortunately in an oncology/BMT ICU, we are all skilled at helping people die well. And at this point in my career, I'm skilled at that part of my job and proud of it. Not proud in a perverse way, but proud to be able to palliate symptoms of pain, anxiety, and breathlessness in one's last moments of life. Proud that I can help guide families through the emotional agony of watching their person die. Proud that the last images they see of their loved one are peaceful, quiet, calm, well-choreographed. Respectful. Clean. I am grateful that we have the ability to allow people to die without suffering, to serve our patients in this way, to calmly let death into the room after beating it back for so long with our various medications, procedures, life support. We spend hours trying to corral irrational forces (life and death) with rational means (science)--it's almost absurd at times.

But as we let the dying person leave the earth, as their suffering ends, the survivors' suffering begins. Their love wasn't free; now they grieve. All of this had me thinking this afternoon--about love. Whenever we love someone we do it knowing (somewhere in ourselves) that someday one of us will say goodbye to the other. It's an overwhelming thought to ponder for too long. You'd think this would hold us back sometimes, but no. We throw ourselves wholeheartedly into love--loving our partners, friends, children, pets...while knowing that it is all temporary and that this will hurt eventually. Talk about optimism! Humans crave love and connection, we cannot resist it (can we live without it?) even though we know that eventually it is 100% guaranteed to come crashing down around us. Every time.

(all is not) lost

There was a heartbeat. I saw it on the ultrasound, but I knew immediately something wasn’t quite right. Was it too slow? Yes, the ultrasound tech said she noticed that too and gave me the wise, all knowing look of a Black grandma who can’t quite tell her granddaughter that something is wrong.

And then there was none at the ultrasound 2 weeks later. I asked the next ultrasound tech to angle the screen when I didn’t see movement. Saw the look on the Radiologist's face and then the Fellow. No heartbeat. The tears began to flow. My body began to shake. I held in the sob knowing if it began here with these strangers it wouldn’t end until I was safely tucked away at home.

You were there. I saw you. You were there. And now you’re not. When did you leave me? My heart breaks. I type through my tears.

I am at home. Grieving. Surrounded by loved ones.

I cry now as I type.

“Mama, are you crying? Did you have a nightmare? Are you frightened?” I stifle my tears. Say to Zo through closed door “I’m okay. Mama’s okay.” He calls out for me and O from his room after bedtime. O goes and comforts him and calls me into his room.  I gather myself, wipe my tears, blow my nose. Zo rushes into my arms “Mama, are you okay? I was having a good dream but then I woke up. Why are you crying? Everything will be okay.” As he gently rubs my face with his amazingly soft 5-year-old hands. As he pats my back. As he rubs my belly. As our family holds one another.

All is not lost in spite of this major loss. You were there. I saw you. You were with me. Now you are not there. But my husband is here. And my Zo is here. Their hearts are strong. My heart is strong.

The stories from friends poured in over the last few years. We are all in our 30s. Gut-wrenching stories of second trimester terminations due to fetal diagnoses incompatible with life. The heartbreaking call telling us of a stillborn nephew. Friends with years of infertility. A family member with seven losses. Stories of rainbow babies after loss. Countless miscarriages. Flashbacks from medical school of being present with sobbing women in the antepartum unit when their ultrasounds showed the absence of heartbeats. I didn’t understand then how the loss of something (a baby? A fetus? I didn’t know what to call it then) not yet realized could cause these women to sob uncontrollably. But I do now. From the moment I saw the positive sign I was hooked. Head over heels. Then the heartbeat. My growing belly. Zo’s “mama, is there a baby in there cuz I think there is.”

I was so excited to tell him he was going to be a big brother but I didn’t because I knew things weren’t quite right and it was all too soon, too early, too many things could go wrong - and they did. But he knew. He knew yet we feigned ignorance.Told him I would go to the doctor to find out.

All is not lost. You were there. We were together. Our family is still here and you will always be with us. We will go on. For we are not lost.

Some day I knew I would write this post.

Last year I posted about trying to cope with my moms breast cancer recurrence.  Four years ago my mother was diagnosed with Stage I breast cancer.  Less than three years after her diagnosis she recurred as Stage 4.  She did not make the 5 year survival mark.  If you look up Stage 1 Breast cancer on the American Cancer Society website, you will find this quote: "The 5-year relative survival rate for women with stage 0 or stage I breast cancer is close to 100%." Irony.

This last year has been spent with me trying desperately to treasure every moment while also trying to stop a boulder.  I have made appointments, had family strategy meetings, endlessly researched and relentlessly picked the brain of her oncologist.  I have tried to make moments out of every pause.  I would often sneak away from my clinic to sit in the infusion room.  We would watch soap operas and chat about bits of everything while I would chart.  My mom worked from home for the last year, and I would occasionally spend my administrative time in her home office. We would gossip and look at shoes online while trying to work.  These moments are some of the most cherished, just the two of us.  Our family tried to band together.  We reinstated family Sunday dinners.  We all visited as much as we could manage.  We organized family outings.  We took advantage of all the grandparents days at the local museums and kids theaters.  But many days were post chemo days or too much pain days, and on those days we just talked and sat.

Thanks to our move, my daughter got a full year of Grandma time. A year I pray she is old enough to remember and cherish.  I will fight to make sure she doesn't forget.  Their love for each other was magical.

My daughter was with us in the hospital intermittently up until my mothers death.  On that final trip she saw something in our urgency to get back.  She asked me, "Mommy, did Grandma's cancer get stronger than the chemotherapy?"  In her pure and innocent love, she drew a final picture of Grandma holding all of our hands, each of us smiling.  At our daughters request, we buried that picture with my mother.  She said, this way we would always be with Grandma.  I am continually in awe of the simple wisdom of children.

I have seen many people die.  I have cried with families in the hospital.  I have sat vigil in the unit trying to will patients back from the precipice.  I saw the scans, I knew this was coming.  But, there was no preparing for this feeling, for this moment.  I have never felt this.  I have no words for it.  As I move past the initial shock I am just trying to exist in this new reality.  I am trying to be normal because it's been a month and now people expect me to function and be "back." But I am still in phase 1 and I have no idea what to do.  I am constantly searching for something...a memory, a piece of her jewelry, a picture, a video, anything to fill this chasm.  I have filled my house with old purses and pictures and clothes and plates and spices and cakes she made from her freezer and each thing is like a single speck of sand. I talked to her every day.  I texted her between cases.  I dropped by to see her on the way home.  What do I do with all of these things I would have told her, what do I do with all of these words that are words only for her.  Who do I give them to, where do I put them.  I re-read every e-mail from her.  I started at the present and just kept reading until the e-mails ran out.  This little journey just confirmed why she is so important to me.  There were encouragements from every moment - before big operations that I was nervous about during residency, before interviews, presentations at conferences, client pitches from my finance days.  She called me before EVERY SINGLE test in medical school.  Somehow she never forgot a single one and she would call me on the morning of the test, making sure to wake up early (she was on central time and I was on eastern) in order to catch me before I left my room.  She was my cheerleader.  She believed in me unfailingly and with such purity it was impossible to not just believe her and strive to be what she saw in me.

I will end with this.  I have been so moved by the outpouring of love in the final days of my mothers life and since her death.  It has come from friends old and new.  Friends who I haven't talked to in years but have reached out to me in a way that erases those years.  New friends and colleagues have been there, supporting me in ways I didn't even realize I needed.  Women I don't even know in Facebook mommy groups have sincerely reached out because they too have experienced the loss of a parent.  These women have been a wall for me to lean against when I felt I couldn't stand.  I am so grateful and thankful for this love.

Love is what feels most like my mother.

Witnessing sorrow and grief; taking trauma home.

About a week ago, I awoke to the news of the Orlando mass shooting-that 49 people had been murdered in the Pulse nightclub--for no other reason than that they were gay, and most were Latinx. The mass shooting du jour in America. You know the rest of the story, because unfortunately we've all heard these stories repeatedly. But it made me wonder about something else, tangentially related--but related to us in our work.

I came across a Facebook post by Dr. Joshua Korsa, an Orlando resident who described his experience caring for the surviving victims. Check out his story here (original post) or here (short news story)--. The "tangible reminder" he refers to below? His blood soaked Keens. He writes (about the survivors of the shooting):

"They've become a part of me. It's in me. I feel like I have to carry that reminder with me as long as [those patients] are still under my care. So this is a tangible reminder that the work's not done. That there's still a long way to go" 

Later I read the NY Times' "Orlando Medical Examiner: ‘Take a Typical Homicide Scene, Multiply It by 50" which was just amazing (for lack of a better word)--in less than 48 hours they were able to identify all 49 victims and in less than 72 hours autopsies were done on every single one of them. That's a logistical accomplishment and an emotional....quagmire. I cannot imagine being a part of that. I cannot imagine how hard that must have been. What exceptional work-- bringing confirmation to each of the 49 families and countless loved ones involved.

But wow, logistics aside--consider for a moment about the pathologists and technicians who did this work, who painstakingly photographed each victim, prepared them for transport to the morgue, the pathologist/assistants who later performed the autopsies, cleaned the bodies--these are the unrecognized people behind the scenes in such catastrophic events. How are they doing this week? How are the police officers? The crime scene technicians? Are they ok? How do people that witness such awful mass casualties cope? 

So that got me thinking (this is how my ADHD brain works, one topic to another, bouncing along)...WE deal with some really difficult stuff.  Not mass casualties (I don't think most of us do, anyway) but day to day casualties of life. Car accidents. People losing limbs. Diabetes, heart attacks, cancer, strokes. Kids dying. Homicides, suicides, accidents. Alcoholism. Lung cancer. New diagnoses of leukemia (surprise! you didn't just "have the flu"!). Homelessness. Stillbirths. Domestic violence. And so on. It's a lot to deal with.

How do you deal with the anger, death, violence, despair, stress, grief in your job? Sometimes it isn't even the death that's so hard, it's the sorrow, the daily witnessing of human distress. Death is a separate entity, and varies in it's impact on me--some deaths leave me with a sense of calm, some break my heart and I swear I never want to go back to work again (but I keep showing up.). Some don't seem to affect me emotionally much at all, and that's ok too. Every one is different.

As I walked around the oncology ICU recently, several rooms were empty-- and I realized as I walked around that I associate almost every room with a patient I have cared for in that room--and who has since died. I often think of them as I pass by (Oh, that's J's room...oh, that was D's room...etc).

As I walked down the long hallway to grab lunch, I thought:

• M's room-she was my age--she died in that room over there, overlooking the water. She and her husband were avid skiers and mountaineers and he shared incredible pictures of their adventures together. I swallowed back tears during rounds that day; that was the second time I'd cried that day. M died of relapsed leukemia and candidemia. 
• D's room-she coded suddenly, and died before her daughter could make it in. The chaplain put her daughter on speaker phone so she could say goodbye to her mom as her mom underwent CPR ("Tell her she was a good mom....tell her I love her....tell her she was a good grandma"). D died of advanced lung cancer.
• M's room-an older woman with AML, the same age as my mom. Wonderful family, with a toddler grandchild who liked to sit on the bed and who was fascinated by the sat probe on grandma's finger. That boy lit up the room. M died of a disseminated fungal infection. 

And so on. I remember many. 

We carry our patients in our hearts and in our minds--they are with us/in us, year after year. And sometimes memories of them/their deaths are comforting while at times they are heart breaking and hard to revisit--even years later. Some patients/deaths I look back on and I feel peace, and I smile at the memories that surface. Some patients/deaths I think back on and tears still come to my eyes-and the deaths were years ago. Some I look back on and my heart rate increases--because their deaths were so awful that I still have an emotional/visceral response. 

So I wonder. I wonder how the nurses, doctors, EMTs, police, pathologists-how everyone that helped victims of the Orlando massacres is doing. And I hope they're ok. And I'm grateful they were there to face such horror, to run into a scene that hopefully none of us will ever have to face. And I hope now that they've taken care of so many others, that others are taking care of them.

And last but most certainly not least, may we never forget these 49 people, almost entirely queer people of color, murdered en masse for being...themselves. 

ZebraARNP. 

*****************************************************************************

In Memory.

June 12, 2016.

Stanley Almodovar III, 23 years old

Amanda Alvear, 25 years old

Oscar A Aracena-Montero, 26 years old

Rodolfo Ayala-Ayala, 33 years old

Antonio Davon Brown, 29 years old

Darryl Roman Burt II, 29 years old

Angel L. Candelario-Padro, 28 years old

Juan Chevez-Martinez, 25 years old

Luis Daniel Conde, 39 years old

Cory James Connell, 21 years old

Tevin Eugene Crosby, 25 years old

Deonka Deidra Drayton, 32 years old

Simon Adrian Carrillo Fernandez, 31 years old

Leroy Valentin Fernandez, 25 years old

Mercedez Marisol Flores, 26 years old

Peter O. Gonzalez-Cruz, 22 years old

Juan Ramon Guerrero, 22 years old

Paul Terrell Henry, 41 years old

Frank Hernandez, 27 years old

Miguel Angel Honorato, 30 years old

Javier Jorge-Reyes, 40 years old

Jason Benjamin Josaphat, 19 years old

Eddie Jamoldroy Justice, 30 years old

Anthony Luis Laureanodisla, 25 years old

Christopher Andrew Leinonen, 32 years old

Alejandro Barrios Martinez, 21 years old

Brenda Lee Marquez McCool, 49 years old

Gilberto Ramon Silva Menendez, 25 years old

Kimberly Morris, 37 years old

Akyra Monet Murray, 18 years old

Luis Omar Ocasio-Capo, 20 years old

Geraldo A. Ortiz-Jimenez, 25 years old

Eric Ivan Ortiz-Rivera, 36 years old

Joel Rayon Paniagua, 32 years old

Jean Carlos Mendez Perez, 35 years old

Enrique L. Rios, Jr., 25 years old

Jean C. Nives Rodriguez, 27 years old

Xavier Emmanuel Serrano Rosado, 35 years old

Christopher Joseph Sanfeliz, 24 years old

Yilmary Rodriguez Solivan, 24 years old

Edward Sotomayor Jr., 34 years old

Shane Evan Tomlinson, 33 years old

Martin Benitez Torres, 33 years old

Jonathan Antonio Camuy Vega, 24 years old

Juan P. Rivera Velazquez, 37 years old

Luis S. Vielma, 22 years old

Franky Jimmy Dejesus Velazquez, 50 years old

Luis Daniel Wilson-Leon, 37 years old

Jerald Arthur Wright, 31 years old

I Wish I'd Said Thanks

One of my mother's cousins died yesterday.

I hadn't seen in her a long time - there's a fair amount of distance in my family, literally and figuratively. Miriam was married to my mother's first cousin. He's an internist (that runs in my family) and she initially trained as a pediatrician and then did a psych residency so she could practice pediatric psych. Which she did; she was still working part-time when she took ill, just a month or so ago.

According to her obituary, Miriam graduated from medical school in 1971, shortly before I turned 11. I didn't remember the exact dates. I do remember - quite clearly - that she was the first woman physician I'd known. There were lots and lots of doctors in my family. They were all men. At that age, I planned to be a nurse. It had never occurred to me that I could be a doctor. And then I met Miriam.

I made up my mind when I was 14 - I was going to medical school. Miriam started sending me occasional articles from JAMA about women in medicine. It was one of those articles that I learned that there was a first wave of women in medicine in the early 20th century; I asked my grandfather and he told me that his med school class was about 30% women (he graduated in 1927). The Great Depression, the rampant discrimination that made it impossible for women to join hospital staffs and the post-WWII pressure for women to leave the workplace changed all that. My father graduated from the same medical school in 1958 and there were six women in his class. Miriam was part of the second wave, the women who went to med school when the OR changing rooms still said "Doctors" and "Nurses" instead of "Men" and "Women" and when women were still routinely asked why they were taking a spot away from a man, since they were just going to quit and have babies anyway. Miriam had babies - two of them - and never quit. She was the first Mother in Medicine in my life.

I don't know what my life's path would have been if I hadn't watched Miriam walk hers. Even from a distance, she was an inspiration to me, and in many ways my first mentor. I just sent a condolence note to her husband telling him that. I will always regret that I never told her.

When we are touched by death, we often want to hold our loved ones closer, and I will do that. I will also think about the other mentors who have touched my life, and start thanking them today, while I have time.

The Question Box

As a pediatrician who is constantly answering children’s questions --my own (staving off bedtime) and my patients who ask everything-- I love Red Humor’s approach of simply and directly answering the “landmine” questions her children ask, in her recent post.   Her post artfully discusses questions about our treatments for people who are very sick, some of whom get better, and some who don’t.  Sometimes when kids ask where people go after they die, they may be asking literally, what happens to their body, see this from KidsHealth and this from the NIH.  There’s a list of books at the end, and a favorite that I can’t get through without crying is The Tenth Good Thing About Barney by Judith Viorst, or even The Giving Tree by Shel Silverstein (just about growing older).  It’s okay to let them see you tear up (and then feel better again) if you are so inclined.

About 3 years ago, stemming from my sister the philosopher, I had written a post here about "mothers who lie" and creative mothering.  But a friend of mine used another idea that works sometimes called the "Question Box" which you can use when you either don’t know the answer, or you don’t have the emotional energy or the actual time needed to fully answer, or you want to bring in your partner on the answer, or if you are asked something very private in a very public place, and so on.   It goes something like this, “that is such a great question, here is a short answer now, but I think we should write that down and put it in our question box so we can answer it more fully this weekend when me, you, and daddy are all together” or “…so we can look up the answer in this great book I have on the human body” or “I don’t think I have a good answer to that right now, but let’s make sure we look it up together.”    But then you have to get to that question box at some point!

Another fun approach to a different kind of question box question is to just lay it out there, “You are never going to believe the answer to this question” and then go ahead and tell them exactly how that baby really comes out of the woman’s body.  Tell them the people in their 2^nd grade class at school may not know this information yet, and they can wait until their own mommies tell them the answer. And, you can wait a wee bit longer on telling them how the baby gets in there.  Just the facts, ma’am.

It’s about creative mothering and telling the truth.  And being in a special place because of what we do at work every day.  And being there for our own children’s growing minds and emotional development.  With lots of questions and some well-timed answers.

It's been a while

It’s been a while since he died.   

And yet…   

He is with me daily as I see him in my children, in my own interactions (when I’m at my best), in how I organize myself, in how I enjoy life, still.  

A marker of time passing.  I have now been alive for longer without my father (alive) than with him (alive).  

He did not live to see me in medicine, as a mother, married, making my way.  

And yet…

As a feminist father, back in the day, he helped me know I could be who and what I wanted to be. He was a kind and patient person, who listened, who cared.  Like everything you would want in a doctor, though he was not in medicine himself.  Like everything you’d want in a father of a mother in medicine.

Did I tell him thank you?  I can't remember.  I hope so.