Any Change

“You should be this depressed,” he holds his thumb and forefinger four inches apart, “Not this depressed,” as he spreads his arms in a false invitation for a hug. He has just reviewed my brain MRI with me. My head remains full of blood clots. I sit to his left in the crowded dark reading room, tears spill onto the scrubs and white coat I’ve been wearing for the past thirty hours. I forget to breathe while I stare at the black and white three dimensional images of the stuttering and occluded veins inside my head. When my lungs demand breath, the rapid intake sounds harsh and loud.

Upon returning to my call room 30 minutes earlier, I hadn’t planned on calling him. I’d been awake for all but three pager-interrupted hours of the past thirty. On call in the ICU, I spent part of the night managing a 43-year-old woman who experienced a severe stroke four days prior. Last night, the ultrasound tech saw clots in her femoral veins requiring the interventional radiologists to put a filter in her vein to catch the clots before they washed into her lungs and suffocated her. The head of the neurology stroke team had been there late last night. I asked him about her prognosis. She hasn’t woken up since admission. She still has a breathing tube; the nurses have shaved all her hair off to make it easier to place the monitor which measures the pressure inside her head, her intercranial pressure. Still, he felt hopeful, “She’s young. She could pull through this.”

I wanted to ask him about my MRI and my stroke, but it seemed the wrong time and talking about it reminds me that it exists. Also, if I didn’t hear anything bad about it, I could still convince myself that the clots have gone. I had checked the computer several times that day already; the final interpretation was not yet in the system. Still, as I worked the rest of the night, the worry swam just below the surface.

After midnight I admitted another young woman whose seventeen week fetus had died inside of her. When the gynecologists at another hospital suctioned the dead fetal contents out of her, she started bleeding and had to have her uterus packed and her uterine arteries blocked off. She had bled enough to have the lowest blood counts I’ve ever seen. Usually, we give blood transfusions to people who bleed this much, but she is a Jehovah’s Witness and feels that accepting blood will send her to hell. She came to us to use our hyperbarric chamber. The three atmospheres of pressure would force extra oxygen into the liquid around her scarce red blood cells. The admission took some time and I didn’t make it to my call room for sleep until after 3 am.

At 5:15 am my code pager also went off, “Code Blue, Burn ICU.” I barely woke up. I felt a bit like I had when I stroked seven months prior, like I could not move my body or force my eyes open or will my brain to think with the little oxygen delivered to it from my own blood. My pager kept beeping and the overhead announcer repeated in a measured voice, “Code Blue, Burn ICU. Room 5--.” Code blue means the patient’s heart has stopped or he has stopped breathing. Calling a code means he is either dead or close to it. When nurses call a code blue the appropriate people come running from all corners of the hospital to do chest compressions and push medicines to fight off death. I think they should wear capes to codes, like superheroes.
I tried to sleep for another half hour after they got his heart beating again. I say they because I dislike codes. By the time I got there, everyone already had their role anyway; more hands just get in the way at that point. Or at least I told myself that.

When I gave up trying to sleep, I started “pre-rounding on”, or assessing, my patients in the ICU. Rounds with the supervising doctor went well, though slowly. I only had two primary patients, the other five I had covered overnight for the second intern. By the time we finished seeing and making plans on all the patients, I felt fatigued and irritable. The residents’ power-trips and callous comments became unbearable. My end stage emphysema patient’s daily obsession with her abdominal distention (which I’d assured her repeatedly was gas) started to wear through my layers of patience. The nurse manager’s frantic attempt to recruit me to talk about transfer paperwork became simply ridiculous, “You’re a doctor, come on,” she demanded. “I’m post-call,” I explained. I felt too tired and annoyed by that point to explain to them again that I needed to leave.

I hadn’t planned on calling the neuroradiologist when I finally made it up to my call room to retrieve my overnight bag. My MRI had been two days ago and since then I had looked at the images myself. Brains are complicated to view, but even I knew enough to see that mine didn’t look right. The preliminary read used words like “absence of flow” and “flow void” and “complete occlusion” in describing my venous sinuses, or the vessels that return blood from my brain to my heart. I tried to compare it to the prior scan which showed clots in many of my venous sinuses seven months before. It didn’t look much better to me. That first MRI had shown a physical reason for my horrible headaches, numb feet and mental decline. It also led to a diagnosis of systemic lupus erythematosus, lupus anticoagulant and a third clotting abnormality. At least now my thinking felt clear again, even if my emotions felt more like the vessels trying to carry blood from my brain: narrow and raw.

As I packed up my call bag, I saw my new coumadin prescription and my purple pill box--constant reminders of what I wanted to forget. I decided to check one more time to see if the final read of my MRI was in the computer yet. I still feel strange looking myself up; being a patient is much harder than being a doctor. Maybe by some miracle, the preliminary resident and fellow interpretations were wrong and the attending radiologist would say it was much improved. Maybe he could even call it “normal brain and vessels.” Denial is powerful.
I still live in intermittent denial months after my rheumatologist told me I have lupus. “I am only 28,” I thought, “I’ve done mini triathlons, climbed mountains, I’ve traveled, I completed college and medical school, I am sturdy and strong. They all must be mistaken; they don’t know me.”

They don’t know me. And, as the months between my two MRIs trickled past, I wondered if I know me either. My parents’ divorce, my car getting stolen, my break up, my lupus flare—everything in those six months blended together into the primary questions: Why? What? How? When?

Why did these “bad” things happen? Why does my immune system attack my own body? Why did I make bad decisions about men in my life? Why did I let them in?

What did I do to deserve this? What did this mean for my future? Could I finish training and become a board certified doctor in internal medicine and pediatrics as I’d planned? What about my brain?

How will I finish training? How do I know this is what I want to do? How will I write, if that’s what I decide to do, and still have good health insurance which now is a necessity? How will I travel? How will I live in the sun, which makes me happy, yet stay out of it because it makes my lupus flare? How will I have time to see my doctors and take my pills and also be a doctor and prescribe pills? How much time do I have?

When will I do everything I want to do? When will I know myself? When will I die?
I hadn’t planned on calling the radiologist, but when I looked up the report for my scan again it still said prelim next to it. I think the report had changed, too. Or I had changed. I find it difficult to tell the difference anymore. It said more about where vessels should be visualized but weren’t. At the top it listed the attending radiologist who was supervising the final impressions of the thousands of images and slices of my brain. I looked him up in the text paging system: “Dr. P--, if you have time, would you mind reviewing my MRI with me? Thank you. Ph---.” I left an internal extension so he’d have some idea that I worked at the hospital. He called back immediately. I tried to suppress the fear that suddenly and rapidly broke the surface of my thoughts.

“Do you mind going over my MRI with me?”

“Not at all.”

“Do you have time now?”

“Yes.”

The brevity of his answers let me hurry through the pre-conversation, trying not to cry, “Is it alright if I come down now?”

“Yes.”

“Are you located in the MRI scanner building?”

“No, in the main hospital. Do you know where?”

It was my turn to say yes, “I’ll be there soon. Thank you.”

At first I didn’t put my white coat back on, but as the elevator descended the 11 floors, I decided to accept whatever sense of knowledge and security and esteem it offered. If I wore it, he would know more about what I’ve done with my life, even if he still wouldn’t know me.

I shook perceptibly as I opened the door to the reading room. It was dark with computer screens everywhere; it was crowded and I didn’t know what Dr. P— looked like. I waited patiently and tried to look at people’s name badges when the white haired man standing next to the door put his hand on the small of my back as he finished his conversation. That must be him. I comforted myself with the fact that he saw me, maybe even saw the dull fright in my bloodshot eyes.

“Let’s go somewhere with more privacy,” he said as he finished his other conversation and ushered me out of the room. He had the presence of a senior doctor around him like a halo.
We walked down the hall side by side. I normally can think of some happy small talk to start conversations, but I felt blank and numb and afraid. We walked in silence through the maze of corridors to another reading room.

This room was also dark and full of residents reading films and reviewing them with their attendings, but we sat down at one unused computer in a corner by the door. Dr. P-- was business-like, but also kind and grandfatherly.

“Medical record number?” he asked as the computer program opened. I have purposefully not memorized my own medical record number despite being asked for it several times a month at my appointments or medication refills. It perpetuates my denial if I have to look it up each time or ask if they can look me up by my last name instead. Just two days before, however, as I waited to get my blood drawn after my resident had accidentally stuck me with a dirty needle, I’d decided I could at least enter my medical record number into my Palm, just in case. I hadn’t known “just in case” would come so soon.

I unclipped my palm from the waist of my scrubs and looked myself up. I gave him the number. The files took minutes to load. He made a comment about this computer taking a while, and then we waited again in silence. I stared at the loading files because I didn’t know where else to rest my eyes and looking there seemed least likely to send me into tears. I didn’t want to look around the room at all the other residents, working and rested and presumably healthy. Although, I have learned that appearances can be deceiving. I look healthy most of the time, too.
There were 10 different files with 100s of images each. There were slices and three-dimensional recreations of my brain, skull, eyes, sinuses, and vessels. Some were in black and white, others were in skin-toned color. The MRI doesn’t see hair, so I was bald in all of them. I knew I’d been crying during the scan, and I wondered if the tears would show up. I looked for bright spots there, but didn’t see anything.

He looked silently and methodically through all of the images. I sat patiently. The sounds of the room faded away. I tried to see what he must be seeing or quiz myself on what part of the brain I saw, but I found it too hard with my own brain, especially when it’s not normal. Even I could see parts missing. And I knew he could see more.

“I like to look at all the images before I get the patient history,” he said as he neared the end of the pictures and pulled up the one that isolated the veins draining blood from the brain. When he was ready, I told him the story I’ve told dozens of times: “I was working on wards here in April and I had headaches. I’d never had headaches before but I thought it was the stress or dehydration or being tired and busy all the time. The headaches got much worse as the month progressed until I could no longer function. My feet went numb and I could no longer read or write or think clearly. I started to vomit intractably and I knew something was wrong. The MRI showed clots in most of my venous sinuses. And strokes.”

“What did they do for you?”

“Admitted me to the hospital and put me on a heparin drip for ten days.” I left out the part about how lonely and scared I was during that time. How I felt alternately numb and terrified. How I felt damaged and broken and uncertain of any future I’d once imagined. I left it out not because I didn’t want him to know how I felt, but because I’d begun to sense that he already knew.

“Classic history,” he nodded. “When I was in med school one of my teachers told me you never want to be an ‘interesting case.’ You’re an interesting case,” he paused and looked back at the pictures, “I was an interesting case, too.” There it was. I could tell he understood and now I knew why. He was a patient/doctor, too. I wonder now if people sense that about me now and if it comforts them in the way that he comforted me just by his presence.

Looking at the picture of the vessels in my brain, he pointed out the filling defects and occlusions and where vessels should carry blood but don’t. I wanted to try to remember the words he said, but I couldn’t. They became muffled by my rising fears.

After I explained about the lupus and the coumadin therapy, he pointed to the clots, “I would go in there and take these out.” I blanked. Surgery on my brain? I looked down at the label embroidered below his name on his white coat for the first time, “Endovascular Neuroradiology Chief,” it said. He is the head of the department that specializes in the vessels of the brain. And he does interventional radiology, where they use live x-rays to guide them into various parts of the body. In his case, into the brain. And in my brain, into the vessels to remove the clots. Long catheters pulling and scraping the clots out of my head. I knew too much for this to pass by in oblivion. And I’d seen and heard of too many complications from seemingly benign procedures.
I could no longer blink back the wells of tears beneath by bottom eyelid. They spilled out as my forehead contracted in sorrow and fright. That was when I forgot to breath and the sharp intake of breath when I finally did inhale was harsh and loud. I didn’t care then if the other radiologists in the dark room heard. They weren’t learning that they still had clots in their brains and that they might need surgery to take them out. He let me cry, “I worry more when people don’t show any emotion.”

When I stopped sobbing, he explained that as a “white-haired doctor,” meaning experienced, he thought I should take plavix and aspirin instead of the coumadin because of the risk of bleeding into my head with coumadin. And the fact that little evidence supports coumadin’s efficacy in the setting of cerebral venous thrombosis, aka clots in the vessels that drain blood from the brain. Thoughts of my biweekly coumadin appointments for the past six months crowded in; I wondered if they could have been avoided altogether. And if the coumadin didn’t help, how does he, or anyone else, know what will work?

I wonder more often these days how much of our ever more complicated modern medicine is imagined. How much of it really helps people or heals them ultimately. If you broaden the definition of healing beyond the physical body, our healing success rate drops significantly. Our treatments sometimes allow people to escape into a false sense of security with a feeling that “at least Medicine is doing something; it is better than the nothing I can do.” By placing responsibility for our own life or death within the control of Medicine (with a capital “M”) we distance ourselves from the guilt or blame or responsibility of learning and accepting our own life arc. Because our health is so intimately linked to our destiny, giving up belief that we ultimately control our health means we give up part of personal choices about creating an individual reality.
I wonder this now as I struggle with which words to choose to express these thoughts. Next to Dr. P-- though, I wondered if everything I’d been doing for my health was wrong. I’d put faith in the coumadin; it is hard to accept the responsibility of my own health. I sought comfort and escape in Medicine, too. I looked at the vessels of my brain as he told me I needed to control my lupus to control the clot formation. How I needed to stay out of the sun and never get dehydrated and learn the subtleties of my own disease manifestations and triggers for worsening the disease.

His mentioning my need to learn my disease reminded me how much I am affected by too much sun, or too much stress, or too little sleep, or too much sadness, or too much fat, or too little exercise, or too much exercise. It reminded me how this disease forces me to live well, or suffer the consequences of joint pain and debilitating fatigue, and return of the headache and clots, and, likely, an earlier death. From those thoughts, a quick reality check as I sat there exhausted and stressed and hungry and thirsty reminded me how unhealthy this career is for me, or at least this phase of it. I wondered, as I had ever since I stroked, if I really wanted to risk sacrificing my own health (physical and emotional) on the alter of Medicine.

“How old are you?” he asked as I continued to cry quietly.

“Twenty-nine now.”

“When I was 27, I walked into a military hospital, as a patient, and didn’t walk out for the next two years. You can make it though this. You are part of a, excuse the sexism, but part of a brotherhood. You are in capable hands. You will meet people who will do anything for you. We have to keep you healthy for another fifty years. You have a long career ahead of you.”
He understood the illness then. He understood the struggle of being a patient and a doctor. But he did not understand that I wasn’t even sure I still wanted to be a doctor anymore. I remembered that he comes from a different generation with higher emphasis placed on self-sacrifice, especially in Medicine. He trained in a time when doctors expected to leave their own loved ones at home to sit at the bedsides of comparative strangers--when doctors often carried the privilege and the burden of recognizing and witnessing the passing of life. Their role, in the collective emotional, if not always physical, health of society was to protect life as well as to validate death.

This is a hard, yet profoundly noble, role he has played. And one which I, sitting there in my white coat, have the potential to play, and given what I know of myself, and all I’ve experienced in these past months, play well.

The hard part in Medicine is not learning all the right answers, although I do worry that I don’t know enough of the answers. One of the hard parts about being a doctor is understanding health and balancing your own health and needs with the health and needs of those for whom you care. Really, this balance represents a hard part of life, regardless of profession.

Dr. P— gave me his cell phone number, telling me by this gesture, that he was one of the people who would do anything for me, as part of the “brotherhood.” We sat there for a minute longer. He knew I had another question and waited for me to get up the courage to ask it. I finally did, and the tears returned as I stammered it out, “So you think I’ll be okay? I still have time?” I wanted validation that what he saw in my head would not kill me anytime soon.

“We all die,” he said. Even in the midst of my struggles I recognized his wisdom in the way he told me this. “But I think you have a long life ahead of you still. We can take care of this. If you start feeling any change, come see me and we can take those clots out. I can’t make you better than you are right now because you feel well now.”

“Any change?” I needed to clarify, “Like more headaches? Neurological changes? Throwing up?” I wanted something concrete.

“Any change,” he repeated simply. This “white-haired doctor” already gracefully practiced what I’ve just begun to learn. With his answer, he gently refused the responsibility for my health. Not because he did not want to accept it, but he’d learned that he could not. No person can accept the responsibility of another’s health. We each govern our own lives.

I have to continue to learn about my body and the new challenges this illness represents for me. If I learn my own “normal,” I will be able to recognize “any change.” We each have our own normal—our own sense of balance and homeostasis and reality. This illness has at once disrupted and stabilized mine. Disrupted in the sense that my vision of my future now must include alterations I never expected to make. And stabilized with the realization that life is unstable. Change is certain. I learn now to practice recognizing destabilizations as precious opportunities for growth.

In the parking garage on my way to my car after leaving Dr. P--, an older woman walking next to me comments that we must be parked in the same lot as we move in the same direction out of the elevator. It turns out she has the closest parking spot in that lot and I have one much further away. “You’re young and healthy, though,” she says. She doesn’t know about the lupus arthritis in my knees that sometimes makes me feel old on the walk downhill to my car. I try to suppress the fatigue and hide my tear streaked face as I reply, “It’s good exercise, though. And it feels good to walk.” “You have many more steps in you,” she says. Literally she means steps to my car, but as I look in her eyes, I see that she also means that I have many more steps ahead of me in life. She believes I have a long life ahead of me, too. My fears of early death are irrelevant. I will die. She will die. Change is certain. “Any change,” Dr. P— has said, “Let me know if there is any change.” Because when change comes, we recognize the opportunity and convince ourselves the change leads to something healthier and more beautiful than could otherwise have been.