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Not Just MDs: Survivors

Elise Craig | December 17, 2014 | Story Profiles

Beating Breast Cancer with Help from Beyonce: Deborah Cohan, MD, MPH
Obstetrician and gynecologist, San Francisco General Hospital and UCSF

After my Stage 2 breast cancer diagnosis, people kept asking what they could do to help. In general, my needs were met—friends and family were taking me to my appointments and bringing me meals and supporting me emotionally—so instead of having them worry, I decided I’d have them dance. We’d all be connected by dancing to the same song—BeyoncĂ©’s “Get Me Bodied.” They would send me videos, and I would watch them while recouping instead of dancing myself.

Before my double mastectomy, I asked the anesthesiologist if I could dance before the surgery. I knew it was a crazy request, but I wanted to be in a really vibrant place and have my body be receptive to surgery. He had two requests: that I not get any medication beforehand and that I not force him to dance. Most patients get medicated and go in on a gurney. I wanted to have my fully conscious self walking in there, choosing to have the surgery.

For me, this wasn’t about ignoring fear—it was about confronting fear and sorrow really directly. I was afraid of death, and once I really fully explored that—what it would look like for me to die right now and leave my two young kids—I just went there. And once I did, it was a discovery that while I had to have this experience, I was not going to die from having my breasts taken off. And then there was space for joy.

I had met the surgeon once, and I didn’t even ask if she would dance. The surgical residents, nurses—I didn’t know them before. I had no idea if they were going to dance, and I was pretty nervous about it. But they got totally into it. The day before my surgery, I had gone to my favorite dance studio with a really close friend from college. I had played the song over and over again and gotten to a really joyful place. I call it somatic imprinting: When it came back on, my body already had joy imprinted with that song.

The anesthesiologist videotaped the dancing with my phone. I didn’t think anything of it, just climbed onto the table and went to sleep. Then, when I woke up, my friend who had carried my phone said, “Your video is going viral.” I said, “What are you talking about?” My friend had posted it while I was still under. People started reposting it on Facebook, then HuffPo picked it up. That was the big turning point.

The friend who had held my phone had been with my parents in the waiting room. Instead of biting their nails there, they’d been dancing. He has a picture with them smiling. Whose parents smile when their child is getting a bilateral mastectomy?

Once the video got media attention, all these strangers started sending me videos from all over the world. Then other women started dancing before their mastectomies. And kids before their cardiac surgeries. It’s kind of a thing now, which is beautiful.

Someone told me that the video is going viral in Israel right now. It was at six million views, then seven for a while, and now eight million. It keeps having this life, which is fascinating to me. I think that in part what people are so struck by is that it’s so counterintuitive to how we think about allopathic medicine and drugs and cancer: that it has to be this scary experience, that you have to leave your personality at the door. Among other messages that I’ve gotten from people, they say that they’re craving connection with their medical team. They’re shocked at the idea of actually being able to do something that feels healing for themselves, instead of taking orders and doing what they’re told.

I’m cured now, but I had four rounds of chemo, and now I take something called tamoxifen. Throughout, I’ve done all sorts of complementary healing: qigong, acupuncture, craniosacral therapy. I take Tibetan herbs. And, of course, I dance. That’s my most potent medicine. I’ve done that throughout—even four days after the original surgery, I went to dance. I couldn’t lift my arms, but I focused on what I could do.

A Superhero Surgeon Brought to His Knees: Andre Campbell, MD
Surgeon, San Francisco General Hospital

Thirteen years ago, I was in Canada for a surgical meeting. I was carrying my son, but there was some ice on the ground, so I put him down. I heard a snap, and I thought it was a tree going down, but actually it was me—at 6 feet, 3 inches, I’m not a short guy, and that’s a lot of weight. I looked at my ankle, and it was independent of my foot. As a trauma surgeon, I knew that it was serious. I had detached my foot from my lower leg, and the doctors had to nail it back together.

I was in Canada, so I had to engage in the Canadian healthcare system. At the hospital, I refused the pain meds for the first couple of hours because I wanted to see the x-ray. I knew how serious it was, but the surgeon didn’t operate until the next day. The guy was really nice, but when I asked why he had waited a day, he said, “I knew you could wait, and I was at home having dinner.” On my second day in the hospital, I called the nurse and told her to take out my IV and give me my medication orally—I was leaving. They wanted to keep me longer, but I just needed to be fixed and get the hell out of there. Physicians make terrible patients—we think we know everything.

I had a trimalleolar fracture—it’s the worst kind you can have. The doctor told me that I’d be back to operating in eight weeks, but I actually had to learn how to walk again. The fall happened in February, and I couldn’t operate again until June. I couldn’t even walk without a cane until October. Being a surgeon is very physically demanding—you could be standing for 12 hours or longer. Instead, I was at home for three or four weeks and going to rehab with other patients at San Francisco General. I couldn’t sleep at night without medication. The experience was very humbling—it really helped me understand what it’s like for patients who are suffering and in pain.

As a surgeon, not being able to operate was pretty terrible. That’s what we do: We take care of business. We stamp out diseases and make the world a better place. I was the one to ride in on the horse and save the day, but I couldn’t do that. Something like this changes your view. For a long time, I thought that I was the only one who could do everything, but you realize that the world goes on without you. I don’t have to be the one to do everything anymore.

The surgeon did an excellent job, the best he could, but I found the physical therapists were fantastic folks. Surgeons are great because they put you back together, but physical therapists make you the best you can be. It wasn’t until eight months after the injury that I started feeling almost normal. I’ve been able to get function back, but I still can’t do the things I love, like play basketball or run fast. It’s never the same, even though they tell you it will be perfect. Sometimes, we lie to our patients.

After Dodging a Death Sentence, Looking for a Cure: Holbrook Kohrt, MD, PHD
Hematologist and assistant professor, Stanford University Medical Center

A lot of physicians say that being sick opened their eyes to what it means to be a patient. For me, that doesn’t really resonate—I’ve had hemophilia my whole life. I had a lot of bleeding episodes as a newborn, and the doctors couldn’t figure out why. Child Protective Services came to my house and evaluated my mother to make sure that I wasn’t being abused. It took almost a month to realize that I had a bleeding disorder, and a month more to understand what it was. It wasn’t until I was at Children’s Hospital of Philadelphia that I was finally diagnosed with hemophilia. My parents were absolutely shocked—it came from a genetic mutation.

I grew up next door to Jehovah’s Witnesses who actually believed that people who get transfusions are going to hell. They ridiculed me on the bus, and they spat in our faces when we opened the front door. I was between three and nine years old when these people were really accosting my family, and it was one of the most directly confrontational experiences that I’ve ever had. To this day, I’ve never encountered so much bias and irrationally steadfast antagonism about a person doing what he needs to do to stay alive.

From the time I was about six until my young teens, I went to a camp outside Philadelphia called Hart Scout Camp. Hemophiliacs took over a portion of the camp for part of the summer to experience what it was like to be with other people like us. There’s nothing more welcoming than seeing other people who have the same chronic illness you do. Camp gave me the sense that I was normal.

But my camp years were at the height of the HIV epidemic, and every year, fewer and fewer of us came back. Back then, every time that you got clotting factor, you got exposed to thousands of people’s blood at one moment in time. Of kids born my year with severe hemophilia, 98 to 99 percent got HIV or AIDS. At camp, we would talk about our symptoms—swollen joints, frequent colds—almost humorously, because that’s what you do. But when we’d come back the next year, there were questions about who hadn’t showed up, what were the kids who did actually sick with, and how sick were they? Then the question became, who had died?

When I came back as a teen, we began to see that some of these symptoms were not symptoms of hemophilia, but of HIV and AIDS. When I was a mid-teen, the camp was stopped entirely because too few of us were coming back. We were talking about hundreds of kids initially. By the end, it was just a few kids. That was striking.

The infection rate was so high that they looked at the rest of us to see if we had genetic mutations for resistance. The Centers for Disease Control did a study of people my age with severe hemophilia, and it found that a bunch of us had mutations that provide natural resistance to HIV from an important receptor of the virus called CCR5. That’s why a subset was able to escape. I was part of the CDC study, but don’t have a mutation. I guess I just got lucky.

As I was growing up and deciding what to do when I was going to college, the impact of being a physician was very clear. The connection that I had to my hematologist was as close a connection as I had to my siblings and my parents. My doctors were integral to my day-to-day life, helping me to be optimistic through really challenging periods. I knew at a young age that there’s something really unique about bonding with patients. I wanted that same opportunity to make a big impact on people’s lives. I was also fascinated by how our bodies work: I wondered why I didn’t get HIV, and why, when I got hepatitis C, my body was able to fight it off. The intricacies between the immune system and the virus were intriguing, and they led to my interest in the immune system and cancer, which is what my career focuses on now. I saw two patients today, and I got a hug from each of them. How many jobs are there where the people you interact with, your customers, hug you because you play such a meaningful role in their lives and, hopefully, they play an equally meaningful role in yours? That’s what I love about being a physician.

From Pain, a New Purpose: Grace Dammann, MD
Medical director, Laguna Honda Hospital Pain Clinic

It was just a normal day. I had picked my daughter up at school in the city, and I was late for a dental hygiene appointment in Marin. So when we reached the Golden Gate Bridge, I drove in the left lane—something I’d never done in all my years of driving over it. My daughter was sitting beside me in the front seat, working on her homework about the French Revolution. My dog was in the backseat.

I don’t remember anything about the accident. One thing I can remember is saying to the state police, “Do not let me pass out until I get to the ER.” I knew enough to know that my daughter and I would not be taken to the same place—she wasn’t badly injured. I remember saying, “You’re going to be just fine, sweetie.” The next thing I remember is waking up 45 days later.

By the time I got to the ER, my blood pressure had bottomed out and I was going into shock. They took me straight to the operating room. I went through 54 units of blood—five times my blood capacity—in the next 24 hours: They sewed up several arterial tears, repaired my ripped diaphragm, opened me up from hip to sternum, and fixed all that was broken. They brought me back to the OR every day for the next six or seven days.

As a physician, I know that it’s nothing short of remarkable that I am still here today. My body should not have been able to survive that.

I’m extraordinarily grateful—and sometimes annoyed, because it’s not been an easy trek, being in this fundamentally otherly abled body, but I didn’t realize that for years. I was totally ecstatic for the first six months after I woke up, not because I was alive per se, but because I was doing everything. The first shower was just exquisite. I’d never noticed how great a shampoo felt, how great each drop of water felt.

Eventually, my doctor ran out of reasons that I couldn’t go back to work. Laguna Honda Hospital invited me to set up a clinic for people in chronic pain. That sounded so horrible, given the experiences I’d had. But I slept on it and said sure. There was no one else in a wheelchair on the medical staff, and it’s helpful. Patient after patient would come up to me and say, “How do you deal with what happened to you?” I have street credibility. I am in a wheelchair and need a lot of help, but I am having a great time.

After the accident, I brought a lawsuit to get a median barrier on the Golden Gate Bridge. I lost, which is fine because the board of directors of the bridge voted unanimously to build a barrier anyway. Both the guy who hit me and I went to the meeting, and we wrote a letter together thanking the board for that action.

In total, I was in the hospital for about 14 months and underwent somewhere between 13 and 17 surgeries. I’m never going to have another one—that became really clear to me when I had surgery for a small bowel obstruction. If I need a colostomy, I’m not getting it. This body has been through enough. But I don’t feel like I’m sick. I came out of this feeling like my life force didn’t want to go, and I’m not worried that I’m going to die soon. I’m worried about how I live with this new reality. That’s what I’m facing.

Getting Back to Life After an Assault: Lee Ballance, MD
Retired doctor of orthopedic medicine, Kaiser Permanente Vallejo Medical Center

It was the day before the Fourth of July in 2005, and I was riding my bike by myself near the Berkeley-Albany border. The bike path was reasonably busy until I got to an area where there was a bridge. A couple of young guys were hanging out on the bridge, and they found a 30- or 40-second window of opportunity when no one was there to observe them. As I passed, one of them jumped off the bridge and slammed me to the pavement and then struck me a couple of times. I got up and tried to get back on my bike, but I couldn't stand. I came to the conclusion that my hip was probably broken.

Physicians spend a lot of time thinking about how and where to get care: Do we want to be taken care of in a facility where we’re well-known, or do we want to be anonymous? For me, the fewer people who knew I was a doctor, the better. If they know you, you become kind of a celebrity and get special treatment, which isn’t always better. No one wants to wake Tom Cruise at 2 a.m., so they don’t check on you. You don’t get a rectal exam when you should. I also didn’t want to have to choose which colleague would treat me. Under the best of circumstances, things don’t always come out the way you want them to, and if I had a bad result, I didn’t want one of my colleagues to be implicated. Better not to be treated by someone I have to see every day for the rest of my career.

I knew that in general, I was lucky to have this injury now and not 40 years ago. The ability to repair and replace major joints today is just incredibly better. I would jokingly tell people in my practice that if an older person fell and broke a hip 40 years ago, you called the doctor and the priest, because there was a significant mortality rate. I wasn’t particularly worried that my injury was something that medical science couldn’t handle, but I was anxious because I was going to have major surgery, and it was going to screw up my life.

I had a type of hip fracture that makes it difficult to achieve a successful repair. It jeopardizes the circulation to the head of the femur, and I had some damage that set me up for future problems. There was a question at the get-go as to whether to attempt to fix it or go ahead and replace the hip. That was the surgeon’s dilemma. Deferring hip replacement is rarely a bad idea, because presumably the surgery gets better as time passes. It’s like buying a new car—as soon as you drive it off the lot, it’s a used car. We elected to attempt a repair, partially because of my doctor’s background as a trauma surgeon.

I was in a wheelchair for three months after the surgery and then on and off crutches for another six. I missed six months of work. I have a high tolerance for reading and listening to music and things like that, but it was nice to get back to work. I missed taking care of patients.

I’m not 100 percent recovered. A few years ago, I had a second surgery, and I have an artificial hip now. I expect a lot from my body, and I was surprised by how much time and effort it took to get back to a high level of function after my hip replacement. But I’m happy to report that I rode 100 miles three weeks ago. There is still life after trouble.

For a Workaholic, the Misery of Bed Rest: Alice Huan-Mei Chen, MD
Primary care internist, San Francisco General Hospital

It’s funny, because I pride myself on being a very evidence-based physician: What does the research show? What is recommended? But when you have kids, a lot of things happen that aren’t evidence based. I had twins, so it was a high-risk pregnancy. I was going to the doctor all the time, with weekly ultrasounds toward the end. I’m someone who never goes to the doctor, but my husband told me to just get a grip and be a patient. At the very end, my OB, who is wonderful, put me on a week of bed rest. I was just so over it. I was trying to make it to 36 weeks, but I had so much to do at work that I was not ready to take time off—I needed a plan for while I was gone. It was miserable. My husband finally relented on a weekend, put me in a wheelchair, and wheeled me into work.

My experience was nothing compared to being truly sick, but being pregnant and on bed rest, not knowing when you were going to deliver, was hard.

The whole time, I was looking up evidence supporting the value of bed rest and venting a lot to my spouse. I was a medical director of one of the large clinics at S.F. General, and I decided, I’m just going to make it to 36 weeks. When I went back to the doctor a week later, she examined me and said I could go out to dinner. So my husband and I went out for Ethiopian food, and at 4 a.m., my water broke. When I got to the hospital, I said, “Can I get a computer? I have to clear out my email queue and send out my out-of-office messages.”

As physicians, you spend years planning ahead because the training is so long. You plan to get into med school, then residency, then fellowship. So physicians tend to be high-control people. When you’re a patient, you just don’t have that control, and it can be a bit jarring.

In my role at San Francisco General, I think a lot about patient perceptions and the patient experience. If a patient is standing there waiting and two colleagues are chatting, it doesn’t feel good for the patient—even if the doctors have a totally legit reason to chat. Healthcare has been a very provider- and staff-centric system, and it’s been an interesting experience coming from the other side, primarily as a parent taking my twins to doctor visits. It’s very humbling being on the other side of the doctor-patient relationship—patients put up with a lot. Experiencing it as a customer has given me more appreciation for how we need to improve our systems. They really should be designed for the patient and not for the convenience of the doctors and staff.

Sometimes, It’s Not the Doctor Who Heals: Rina Shah, MD
Deputy chief of staff and primary care physician, San Francisco Veteran’s affairs

In April of this year, I took a really bad fall at work. I was taking the stairs from the third floor to the second, and I tumbled when I was four steps from the landing. Because I was trying to protect my head and neck with my right hand, I landed on my right elbow. I had multiple fractures of the humerus and a dislocated elbow—but at least the brain was OK.

When an anesthesiologist arrived at the stairs, he started checking my head and neck, which is what you do first. At that moment, I said to him, “You can talk me through this thing, but lying down, I’m the patient, not the doctor. You will not hear an argument from me.”

The fracture was very severe—the lower part of the humerus had shattered into eight pieces. Putting the fragments back together took three titanium plates and 16 screws. When I woke up after the surgery, one of my nerves was paralyzed. The feeling in my thumb and index finger is abnormal. Hopefully, it’s not permanent, but nerves take a very long time to grow back. Under perfect conditions, the nerve will grow one millimeter a day—barely an inch a month. I’ve recovered enough that now I can lift my wrist against gravity, but I’m still waiting for the fingers to kick in. The nerve has to grow from before your elbow to your wrist—it’s a long journey. Unfortunately, the ligaments in the joint were completely torn and unsalvageable, so I had to have a ligament transplant from a cadaver. When you do that, they don’t let you bear weight or lift too much for the first six months. Now I’m allowed to lift up to four pounds with that arm. But that’s the weight limit—a gallon of milk.

I’m back at work, but haven’t been able to return to direct patient care yet because the paralyzed nerve affects my dominant hand—I don’t want to miss anything during examinations. It wouldn’t be fair to my patients.

Accolades are always given to the surgeons, but in retrospect, it was my hand therapist who was able to put me back together. She’s the one who washed my hand after surgery; she’s the one who told me that I could shower again. What was amazing to me is that to recover, you need not only the surgeon but also the hand therapist, the nurses, you need all these people thinking about you and trying to help you mend. As deputy chief of staff, I’ve always said that it takes a very large team. I got to see that team come to fruition in front of my eyes.

Working Through Lung Cancer: Paul Kalanithi, MD
Neurosurgeon, Stanford University

I worked for about a year after my lung cancer diagnosis, finishing my training, operating, and seeing patients a bazillion hours a week. I’ve had to take time off from that for the last couple of months, and as my strength improves, I’ll evaluate how to get back into patient care.

As a doctor, you have the sense that if you were to get a serious disease, you would retire and sit back and spend time with family. That’s the standard narrative that we tell each other. But once it became clear that I wasn’t going to die in the next couple of months, that I would live for at least a few years, I decided to go back to neurology. When I told my colleagues, a number of them asked, “Why don’t you just spend time with your family?” My reaction was, “Why don’t you go spend time with your family? You’re making the decision to do this work because, properly understood, this work is a sacred thing.” I had thought a lot about what I wanted to do with my life, and that didn’t change when I got sick.

As a doctor, you can get some sense of what it’s like to be sick, but until you’ve done it yourself, you don’t really know—it’s like falling in love or having a kid. We don’t appreciate the mounds of paperwork that come with it. And tiny little things: When you get an IV placed, you can actually taste the salt when they start infusing it. They told me that this happens to everybody, but even after 11 years in medicine, I had never known. There’s a whole mess of things like that, little details that you don’t appreciate as a physician.

Unless you’re going to have cancer therapy define your life, you have to start caring about other things. I still maintain hope that I can get back to clinical work and neurosurgery, but I’m fully aware that they will be among the first things to go in terms of what I’m able to do. Surgery is actually hard labor. That led me to consider other possibilities, where you can still be productive even if you’re tired or having back pain or whatnot. One option is getting back into lab-based neuroscience. Another is working on scientific advisory boards for companies. On the less scientific end of things, there’s work in teaching and, of course, writing.

I wrote an Op-Ed for the New York Times discussing my experience, as a doctor, delivering information about diagnoses, and as a patient, receiving my own diagnosis. In particular, the focus was on the seemingly critical question, 'How long do I have left?'—how doctors don't know the answer, and how patients are looking for something more.

It completely surprised me that it resonated with so many people. I still get an email nearly every day from someone with heart disease or depression or another medical illness, saying that it helped clarify his or her own situation. The second, and really pleasing, development was the number of doctors who emailed to say that they planned to give the article to their patients or incorporate it into medical school curricula to help students understand the human impact of disease. That was really touching. I’m currently working on a book proposal about my experience: It’s a larger look at the meaning of being a doctor and the meaning of being a patient, and how those meanings change when you can see from both sides.

After I wrote the piece, I finished residency, but also relapsed and had to go through chemotherapy. I’m more or less recovering from it right now. I had standard chemo for about three months, but unfortunately, I’m one of those people who get every chemo complication, so I was bouncing in and out of the hospital for several months. My daughter was born about two days after I was discharged. She and I have been chilling out at home for the last three and a half months.

I’ve kind of stopped looking at survival curves. They don’t tell you about you—they tell you about the disease population. What’s going to happen to you will fall somewhere within the range. It’s pretty wide.

Originally published in the January issue of San Francisco

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