11.9.21.1

…and almost succeeded. Here are the details:

It was September 15, 2018. Carol and I were getting ready to go to the Four Seasons Hotel downtown for an ovarian cancer conference. Carol had been diagnosed with ovarian cancer on March 17 of the previous year, and we had been struggling mightily to keep our morale up and stay positive. That morning I was tired (after all, it was early on a Saturday morning), and, for the first time since Carol was diagnosed, I felt tempted to say “Honey, would you mind if I sit this one out?” I imagined that she would let me sleep in and go by herself, but I did not have the heart to desert her. Up to that point I had faithfully accompanied her to every doctor’s appointment, every chemotherapy session, and every test.

I dressed up in a blue blazer and a red tie (something I don’t even do when I’m going to work–since being forced to wear a tie every day for six years in school, I hated to wear a tie), and Carol put on an attractive floral-patterned dress. Off we went to Boston.

The room was set up with long tables adorned with tablecloths, water pitchers, and thermal carafes of coffee. I had been trying to cut down on my caffeine consumption, so I made myself a cup of half caf-half decaf. That really didn’t do it for me. I had had a strenuous week at work (actually they were all strenuous), and I was tired.

We were sitting at the second long table, a few seats in from the left. A male doctor gave the first talk, which was unmemorable. As the second talk started, I put my head down on my arms, which were crossed on the table. I would just rest my eyes for a second.

The next thing I knew, I was face down on the floor. I was lying in about an inch of body-temperature water. There was a bright light behind me, and I heard a woman’s soothing voice. It was Dina, my best friend from high school. “Eddie, it’s all right…” she said. “You can go now, or you can stay. Either way, it’s your choice Eddie. Of course we’d like it if you stayed, but it’s okay if you want to go too.” I had a peaceful, almost sensual feeling.

I heard myself address Carol. “Honey, I could stay now, or I can go. What do you want me to do?” “Please don’t go”, she said. (Later on she told me that this conversation never took place; it was all in my head.) “Okay, I’ll stay…” I said, and as I said that I began to feel pressure in the middle of my chest, getting more intense by the second.

I realized that there were two EMTs (emergency medical technicians) by my side, putting stickers on me. “What are you doing?” “We’re getting an EKG (electrocardiogram), sir.” Shouldn’t they be starting an iv first? I wondered. “What does it show?” “It shows that you’re having an inferior MI (myocardial infarction: heart attack).” “Well for God’s sake start a line and give me volume!” I said, as if speaking to a child. They did. I became aware of them taking my blood pressure. “50 over palp (palpable).” Everything went to gray, then black. (The next part of the story comes from Carol and my chart.)

Tufts medical center was just a few blocks away. When we reached the emergency room, the cardiologist, Andy Weinberg, was already there. He took one look at me and said “Let’s get him to the cath lab.” “But they’re not here yet.” “I don’t care, let’s go.”

Carol got to the cardiac catheterization lab just after I was whisked in. She was with a new friend, a nurse named Patricia. They heard a code blue called and saw many people run down the hall and into the lab. The chaplain arrived and looked confused. Carol took their hands, and they stood in a triangle and said a prayer for my soul, and for my life.

Inside the lab all hell was breaking loose. I had lost consciousness and gone into VTach (ventricular tachycardia) and then VFib (ventricular fibrillation). They began CPR, and then shocked me with 200 joules. I came back in sinus, but deteriorated back into VFib. They gave me lidocaine and shocked me again.

The anesthesia team arrived, led by a young Chinese-American doctor named Andrea Chai. They intubated me and started to bag ventilate me. The cardiac team resumed chest compressions and then shocked me again. “Call the ECMO (extracorporeal membrane oxygenation) team” Andrea ordered. They continued their resuscitation.

The CPR (cardiopulmonary resuscitation) lasted 33 minutes, and I was shocked seven times, all but the first at 400 joules. The ECMO team got access through my groin and started me on life support, essentially heart-lung bypass. They put me on a ventilator and started a Versed (midazolam) drip. (I have no memory of any of this.)

They placed an LVAD (left ventricular assist device) into my left groin, which was the size of a ballpoint pen. This went into my descending aorta and worked like an Archimedean screw, pushing blood out to my periphery.

In the meantime, Dr. Weinberg placed two stents into my left anterior descending coronary artery, a long one into the main artery and a shorter one into a branch. He also performed an atherectomy on my right coronary; the ruptured plaque at the takeoff of the artery had caused my heart attack. There was one more 70% stenosis in a diagonal branch of the LAD. But by this time the team was exhausted and Weinberg decided to leave it for another day, if such a day should come. One of the doctors went out to the waiting room and told Carol that I had a ten percent chance of surviving the night.

Seven hours later, I was taken from the cath lab to the CTU, the cardiothoracic unit.

An hour after my arrival, I was rushed to the operating removal for evacuation of a large clot which had developed at the LVAD site. The LVAD was removed.

During the next 48 hours, my kidneys, already functioning at 25% of normal based on long-term lithium use, shut down completely, a process called ATN (acute tubular necrosis). I was placed on hemodialysis. I was heavily anticoagulated to prevent my blood from clotting on ECMO. This had contributed to the groin bleed, and then led to heavy bleeding into my right lung, which soon became filled with blood. Dr. T.J. Fournier performed a six-hour bronchoscopy, fishing out wet clots until my lung passages were clear.

Carol told me that David and Jonny came into my room and sang songs to me, with Jonny playing on his trusty acoustic guitar. I have no memory of this, nor of the many family members and friends who came in to visit me one at a time (together with Carol). Carol had summoned my entire family of origin, and they took over the CTU waiting room for a month. They played board games, knitted, and composed Spotify playlists to play in my room.

As I was weaned from the sedation, a few experiences became memorable. The hemodialysis was torture. I was freezing cold and alone for most of the four-hour sessions. There was a window, but a large roof vent blocked my view. I could hear girls playing soccer outside. I felt the constant need for companionship, and even threw objects off my bed into the hall to get the nurses’ attention. By this time Carol was exhausted, and used the dialysis time to take a break from being constantly at my bedside. (Or else she was not allowed to be there.) If I had to live the rest of my life on dialysis, I prayed that my life would be mercifully short.

One night my prayers were answered. My life didn’t end, I began to pee! I remember feeling the urge for the first time in weeks, and then watching a miniature geyser issue forth from my penis straight up in the air! I tried to stem the flow with my hands, all the while calling out to my hero, my nurse Craig (who I later learned was a tech), thrilled that I would no longer need to suffer through dialysis.

Peeing became a challenge. Each time I tried I soiled my sheets, and the nurses had to change the entire bed. I couldn’t go while sitting either, and when I stood up my balance was so poor that I couldn’t stay upright long enough to pee. Finally I mastered peeing while supine into a urinal.

Later on, I remember getting an MRI (magnetic resonance image) of my head. The machine was extremely noisy, but I was oblivious. The MRI showed that I had a small stroke, which my doctors pooh-poohed, saying that it was a common side effect of the ECMO. I learned a year later that the reason I got the MRI was that I fell backwards off the scale when I was being weighed. Being anticoagulated, I got a big laceration which bled like stink and scared everybody. They were obligated to get an MRI to rule out an intracranial bleed. They were relieved to find “only” the little stroke. They never did tell my family about that incident, although they were totally transparent about every other aspect of my care. As a matter of fact, they spent literally hours discussing every detail of their decisions with my older brother, who is a physician, and David, Jonny, or Carol. My brother would come in at the beginning and end of his workday, exhausted, and then spend an additional hour or two going over my care with my doctors. Again, I have no direct memory of this.

While emerging from my medically-induced coma, I was frankly delirious. I tried to pull out my lines, including my nasogastric feeding tube and my hemodialysis lines. They had to one-on-one me with a person whose sole job was to protect my lines from being removed. I could not even scratch my nose without a strong hand grabbing my wrist and preventing me from doing it. It was yet another form of subtle torture for me, to have to endure itching without being able to scratch it.

One morning I discovered that, instead of shaving the stubble which was forming above my lip, I could pull chunks of skin off with the hairs attached to it. I was gleeful that I had found a way to avoid shaving! When my brother Harold came in and saw me doing this, he went out to the store and returned with a Norelco electric shaver. (See “A tribute to Habeb” in this blog.)

In the meantime, I totally lost my taste for hospital food. It was either too hot, too cold, or both, one then the other. When it cooled off it tasted to me like cardboard. Carol went to Mary Chung restaurant in Cambridge and brought me Mary’s delicious egg-drop soup. When I liked it, my niece Lily and her boyfriend Alan repeated the trips to get me more. Each trip required Carol to fight for a parking spot in Central Square, while Lily and Alan could double park and have one of them run in to get the soup. The doctors started me on the antidepressant Remeron (mirtazapine), which has appetite-stimulating properties.

After six weeks, including two to guide me out of my delirium, I was transferred to a rehab hospital north of Boston. My cousin brought me a large container of the Korean marinated beef dish bulgogi. I ate a few mouthfuls and absent-mindedly leaked most of the marinade onto the floor, where its sugar congealed into a hard mess. The cleaning people were never able to get rid of the sickeningly sweet smell during the two weeks I stayed there.

My mom came to visit me from Connecticut. My brothers had shielded her from the entire incident for fear of upsetting her too much, and so she was somewhat taken aback by my level of disability, and the fact that she had missed a period of critical illness.

At my discharge from the rehab, the nurses played the theme song from “Rocky” over the public address system, a routine sendoff for the successfully rehabilitated patients. An orderly pushed my wheelchair out onto the street where Carol was waiting in her Camry. We drove toward home, twenty five minutes away.

Five minutes from home, my butt was killing me, and we also realized that we had left my walker behind at the rehab. We pulled over at the neighborhood nursing home, and Carol went inside and pleaded with them to lend us a walker. Armed with the borrowed walker, we arrived home eight weeks after our departure to the Four Seasons. The fall season was almost over, and the nip in the air foretold the coming winter. With Carol’s help, I worked my way up the five deck stairs into our back door. I was home, and I was alive.

The following week was Thanksgiving, and my entire family congregated at our house for a huge feast. I looked at the food, incredulous that we could tackle such a huge meal. I picked at my plate with marginal interest. However, the mood was convivial. Everyone was relieved that I was back home safe and (relatively) sound.

During the next few months I experienced a wave of euphoria. I wrote several emotional pieces in my blog, including two short stand-up comedy routines (one was actually a heartwarming story) which I delivered at a local cafe to a minuscule but appreciative audience (mostly the waitresses and bartender) spearheaded by Carol. I enrolled in a cardiac rehab program where I spent the entire time slowly riding a reclining stationary bicycle. I made friends with a retired surgeon named Blake who happened to be a good friend of my brother.

After that, the heavy sedation which had been used to control my delirium in the hospital kicked in, and I fell into a depressive, apathetic state. I began to spend the entire day lying on the couch (actually a loveseat which was too short to lie on) with my legs up on pillows to relieve the lower body neuropathy which was a common after-effect of the ECMO. I had the depressing thought that my stroke was almost in the same exact place as the one which had lobotomized my dad at the age of 62. I was 65.

Despite the neuropathy and weakness which was the result of her chemotherapy, Carol cooked breakfast for us (usually scrambled or over-easy eggs and toast). For our second and last meal of the day we usually ordered out. Carol would start a load of laundry, and I would dutifully make the remaining trips down to the basement to move the clothes from the washer to the drier. Sometimes we did two loads at once, which required one extra trip.

I continued to accompany Carol to the Farber for her chemo sessions, which were usually marked by incredibly depressing CA125 blood test results. Each result was like a body blow to us both, and we would sit holding hands in the waiting room, looking out the large picture window overlooking Brookline Avenue and trying to push away thoughts of Carol’s impending death.

Each post-test depression lasted several days, after which we began to recover some semblance of our new-normal life. Carol would return to the Farber for acupuncture treatments, to which I also accompanied her and napped sitting in the waiting room. I was fascinated by the large sculpture of stylized zebrafish outside the Zakim center, and learned that each fish was awarded to contributing families for $3000. I wondered if I could raise the money among my family members to buy a fish for my brother-in-law, who had died recently of leukemia in Korea. (I couldn’t, and his wife, my older sister, later said that she was glad of it. It was no replacement for a proper gravestone.)

On days that I felt more energetic (and hungry) I would walk the short distance to the neighboring food court and have a plate of chicken teriyaki. Carol would renege on that option and eat at home.

I pleaded with my new psychiatrist to lighten up on my sedation, and she did albeit slowly. After about a year of oversedation, I finally began to emerge from my dopamine-blocked Haldol-like stupor.

During these days our only form of meaningful exercise became walking around the block, which each of us did alone in about eight minutes. (If it took longer I began to worry.) We didn’t watch TV. I spent my time either napping, doing nothing, or obsessively playing a cellphone game called Threes (well-meaningly introduced to me by David). I played that game for so many hours that I actually burned the starting screen into my cell phone’s LED (light-emitting diode) screen, which is almost impossible to do. Carol’s preferences were Spider Solitaire, Candy Crush, and Fishdom. Candy Crush actually was sneaky about taking money from the player in small increments, so she stopped playing it, but could not bring herself to delete it from her phone. She also read books about fighting cancer, and we did meditation exercises together (our one TV activity), to which we usually fell asleep until it turned dark. Carol had long phone calls with her sisters and close friends, which I came to dread because she usually repeated the fears and depressive thoughts that I was trying to protect myself against.

She did do remote Reiki exercises with my younger sister in Connecticut, with surprisingly dramatic effects. After one such session she jumped up and walked briskly around the block after not having done so for weeks. When she got home she began to clean up the kitchen and cook dinner.

Carol had frozen dinners delivered to us by a charitable group called Ovations for the Cure of Ovarian Cancer. The food was delivered by an attractive young woman with long chestnut hair, early on the cold winter mornings. When the food came Carol would rouse me off the couch because the large bag was too heavy for her to carry downstairs. In the basement I would unload the food into our full-sized freezer. Every month she would make a voluntary donation to defray the cost of the food.

We had little to wake us up in the mornings, so we would sleep late, waking up to do the New York Times Spelling Bee game together. We would play it competitively at first, then consolidate our lists and play cooperatively until we reached “genius” status, or on auspicious days “queen bee”, which meant that we got all possible words out of the seven letters provided. We got “cheats” from a website published by a man named William Shunn. Each day we would ask “Is it time to Shunn?” and then see how many words we had yet to find. When we reached “genius” at the same time, we called it “coming simultaneously” and gave each other a sexy kiss. Because of Carol’s neuropathy, that was the extent of our physical intimacy.

Our schedule on chemotherapy days was dictated by the Farber’s schedule, which always seemed to be nearly saturated by the time we made our appointments. As a result, we had no regular time, but either had to wake up before 7am in the frigid mornings or kill time before 2pm starts which left us among the stragglers at 8 o’clock in the evening, being tended to by the second-shift nurses. Together with the oppressive blood test results, this irregularity wreaked havoc with any feelings of well-being that we could muster between sessions, which were every three to four weeks until the end, when they became more frequent. So now we’ve pivoted from when I tried to die to when Carol was about to die.

This post is entitled “Three years ago I tried to die…” I believe that to be true. As an anesthesiologist, when faced with situations where my patient was threatening to die, I was used to having some measure of control. In this situation, as a doctor and as a husband, I felt that I had none. I spent the first year and a half of my wife’s (diagnosed) illness in denial, fighting all-out for her life. At that point, reality began to set in, and I realized that we were helpless, literally without help, against this cancer. This literally broke my heart. I flipped off an ulcerated plaque at the takeoff of my right coronary artery and tried to die.

I ended up fighting for my own life because Carol asked me not to leave her. After this prolonged horrific event, I realized that I had to survive her; it would not have been fair for her to go through my death twice.

I feel that God spared my life in order to allow Carol not to die alone, so that I could comfort her, bury her, and honor her memory as she deserved. I am grateful that I have been able to do all of these things.

Now I’m trying to figure out what’s next.

As always, dear friends, thanks for reading.