Diaries: “You Surpass Them All”

I. Monday, April 23, 2018 - A meeting with a surgeon

“You are so handsome,” my wife whispers to me with affection.

She has been saying this sort of thing often to me lately, maybe because my health has been getting worse. We are sitting across from each other in a surgery consulting room on the second floor of City of Hope Hospital, California. This consulting room is very small, with barely enough space to allow a single computer, a pair of chairs, a set of medical equipment, and a small table--atop of which are arranged a few intimidatingly shiny surgical knives. This isn’t the ideal location for a couple to be expressing intimate romance.

We came here today clinging to a thread of hope that this surgeon might be willing to operate on me and remove the two tumors in my neck that are growing larger by the day. These tumors were discovered during a CT scan on April 4, 2108, but I didn’t learn about them myself until visiting my oncologist Dr. Sumanta Pal a week later, on April 11. Knowing there was nothing good about the tumors, once I got home that day I sent out a social media message to all my friends: “Everyone, if in a few days I disappear from the chat, please don’t worry about me…”

The person who walks into the consulting room is Dr. Ellie Maghami, a surgeon who specializes in head and neck tumors. She gets straight to the point, bluntly telling me the facts of the situation: The cancer tumor in the back of my neck has already invaded my trachea and vocal cords, making it too dangerous to perform local surgery; trying to surgically remove it could cause permanent damage. Another option is to remove my trachea along with the tumor, then create a separate opening in my chest and insert a tube connecting to my lungs in order for me to breathe. This method will have a serious effect on my quality of life. In addition, there are still a lot of cancer tumors in other parts of my body, like timed bombs ready to explode at any moment; the surgeon therefore believes that making a big fuss over operating on such a sensitive area will be a high-risk operation, with more losses than gains.

Dr. Maghami’s words shatter my last remaining strand of hope. Ten years of experience living with cancer have taught me that if a surgeon refuses to operate when the anti-cancer medication has stopped working and the tumors are growing at a rapid pace, the patient in question won’t have much longer to live. When she mentioned threading a tube through my chest to help me breathe, I couldn’t help but shudder, remembering a tear-jerking movie I'd watched with my wife over the weekend: Breathe. (1) In that movie the protagonist, Robin Cavendish, had had that sort of breathing tube stuck in his chest. He was the longest-lasting patient in English history to have relied on a ventilator for survival. His wife, who’d stayed by his side and taken care of him throughout the years, coincidentally had the same name as my wife beside me - Diana. She’d sacrificed years of her life, devoting all her energy to tending her fully-paralyzed, ventilator-dependent husband. The film realistically portrayed the difficulty the protagonist had in trying to breathe through the tube in his chest, as well as the terrifying image of great amounts of blood flooding out from the area where the tube was inserted. Inwardly I think to myself that using this method to struggle at death’s door would be much too unfair to my wife, who has already taken care of me for so long.

As we are parting with Dr. Maghami, she takes the initiative to hug me and my wife Diana, telling us that her own father had died from the same kind of cancer I have, and that she feels great compassion and sympathy towards my plight.

II. A conversation in the hospital hallway

We sit down in a corner of the hospital hallway to eat breakfast: a small box of oatmeal, a small container of fruit, and a banana. As I swallow bite after bite of oatmeal, I think about how I might soon lose the ability even to do such basic physiological functions as swallow food, talk, or breathe through my nose, and tears begin to stream down my face. In my countless narrow escapes from death over the past ten years, I have always been prepared for this moment to come - but now that the moment has arrived, and I've learned how miserable my coming death will be, I've lost the desire to survive. All I want is for God to take me away before all that can happen, so that Diana won’t have to sink to such an extreme level of suffering, watching as venomous tumors slowly torture and swallow me. In the past ten years, she’s already sacrificed too much for me.

I tearfully turn to Diana, saying, “I don't want to continue putting you through so much trouble for my sake.”

“I don’t think it’s much trouble at all!” She pulls a handkerchief from out of her pocket, softly wiping away the tears on my face as she consoles me in her gentle voice: “I have it a lot easier compared to the Diana in that movie we watched last weekend. She had to take care of her husband for over thirty years, and I’ve only done this for ten; back then they didn’t have washing machines, so she had to use her hands to wash all those bloody sheets, but we now live in a time where washing machines are available…”

Seeing that I am still unable to speak through my sobs, she continues to say, “You have to know you’re not living just for yourself - you still have me, and your three children, and the grandchildren you’ve yet to meet.” Her words are calm as still water, seeming almost as if she hadn’t heard the horrifically bad news the surgeon told us just moments ago.

Live to see my grandchildren? How could that be possible? I think back to the CT scans we'd looked at in the surgeon’s office, the tumor constricting my trachea to the point of making a dent in it, seeming to leave me a quarter of the breathing space I once had. If this tumor continues to grow at the same pace, it won’t be long before it blocks my windpipe entirely, causing me to suffocate to death. Plus my daughter just got married last August, and the newlyweds don't seem like they're planning to have any kids in the near future. Our two twin sons have even less chance of that happening, considering they don't even have girlfriends yet.

“I won’t be able to see them, it's too late,” I mumble quietly to myself.

“Do you still remember what I prayed to God ten years ago?” she reminds me in a soft and tender voice. Ten years ago, when I went through two surgeries over the course of six months and the doctors said I’d only have one year to live, I was bogged down in a hopeless desperation. But she said to me: “I’ve prayed to God to let you live another fifteen years.” At the time I hadn’t taken her words seriously - live another fifteen years? To me, lying on the verge of death, such a possibility was an unattainable dream.

The fifteen years my wife mentioned was referring to a revelation she obtained from a Bible verse: “I have heard your prayer and seen your tears; I will add fifteen years to your life.” (2)  This is a line that God passed down through the prophet Isaiah to Hezekiah, king of Judah of Israel, during the final years of his reign. The name Hezekiah came from the Hebrew “חזקיה”, meaning “God is my strength”. He was a king during the final years of Judah in BC-era Israel, and was the king most loyal to God in the history of the kingdom of Judah, ruling for 29 years before he died at the age of 54.

I don’t have as much faith as Diana does. I can’t in any capacity place myself on par with Hezekiah in the Bible. He’d held an illustrious position, second only to King David as the king most loved by God, was 39 years old - right in the prime of his life - when he contracted an incurable disease, and God had heard his prayers. I, meanwhile, was already 56 when I was diagnosed with state IV kidney cancer ten years ago, seventeen years older than he had been at the time; why would God bother extending my insignificant lifespan?

But Diana has reiterated it to me every year, and now ten years have passed. Over the course of these ten years I’ve gone through six surgeries due to the cancer recurring, and every time before I am pushed into the operating room, not knowing whether or not I’ll come out alive, she always leans over by my ear and gently says, “You haven’t reached fifteen years yet; I’ll be waiting for you outside.”

III. Thursday, April 26th - A meeting with the radiologist

Since removing the tumors through surgery is no longer an option, my oncologist Dr. Pal suggests I try radiotherapy instead. Three days later, Diana accompanies me to an underground room of the hospital, where we meet a radiologist named Dr. Almini; he's a handsome young man, who can’t resist expressing his great amazement at the fact that I, a ten-year stage IV kidney cancer patient, have never undergone radiotherapy before. I half-jokingly say to him, “This underground radiotherapy room of yours is the one place in this hospital I least want to visit.”

Dr. Almini smiles and nods, showing his understanding of a patient who is unwilling to meet him, and gives us a brief introduction to the radiotherapy program. These past few years, he says, America’s radiotherapy techniques have had a lot of revolutionary breakthroughs; unlike traditional radiotherapy, they only focus a single ray of radiation on the tumor, and with image-guided radiotherapy, he can use computer images to have 360-degree control over the radiation target. In order to achieve precise positioning, he first needs to custom-create a face mask which will hold me in place.

Listening to this radiologist energetically divulging so much radiation-related information, I ask, half-doubtfully: “Can this 360-degree radiation really kill the tumors in my neck?”

“Because what you have is renal cell carcinoma (RCC), traditional radiation won’t be able to kill it; if we use the new 360-degree radiotherapy technique I just mentioned though, it will have a very strong healing effect. Of course, the dead tumor cells won’t disappear, so they’ll stay there in your neck the rest of your life.”

“Are there great side effects to radiotherapy?” I cautiously ask.

“That’s the question every radiotherapy patient who comes here is most concerned about.” It seems as if Dr. Almini was expecting me to ask this, as he quickly explains: “Radiotherapy’s side effects are much stronger than your previous targeted therapy and immunotherapy medications, especially because your tumors have already begun to constrict your trachea, so we can’t avoid the radiation causing some damage to your trachea and vocal cords. This means that for a few months you won’t be able to swallow food, and you might not even be able to speak. Besides that, the side effects of radiotherapy are long-lasting ones, so your trachea might atrophy and stick together in a year’s time. There’s no need to worry though, because when the time comes we’ll attempt to stick an object like a little balloon in there to push it back open.”

I don’t quite catch the doctor’s last line, neither do I ask about it. He pauses a moment, catching his breath before continuing: “The most serious side effect is that radiotherapy in itself has a chance of causing cancer, but that can take many years to occur - so as far as you’re concerned, it’s not a factor you really need to consider.”

At that point, the three of us share a smile of mutual understanding. It goes without saying that this serious side effect has no chance of happening to me, because the tumor currently growing within my neck won’t allow me to live that long.

“Are there any questions you’d like to ask me?” asks Dr. Almini.

“No. I’ve lived all these years by relying on faith,” my wife blurts out.

Hearing an answer he hadn't expected, this prize-winning expert in the radiology sphere is momentarily at a loss for words. After a pause, he nods and says with a smile, “You’re right, science and faith are both necessary here.”

“Go home and talk it over, there’s no need to rush your decision. If you agree to do radiotherapy, go ahead and sign your name on this document,” says Dr. Almini as he hands me the consent form. I take the form from his hands, signing my name without a moment’s hesitation. At this critical moment, it seems as if I have no other choice.

As we are leaving, Dr. Almini has his nurse prepare a radiotherapy schedule for me: I have to undergo the procedure five times total, starting May 8, 2018. Before that, I have to come to the hospital’s underground room tomorrow to make preparations: the technical staff need to measure me for a face mask, as well as doing a CAT-scan.

IV. Eating Juicy Dumplings (小笼包)

We leave the hospital building, heading towards the parking lot. I walk very slowly, counting the days in my head: there’s still 12 days before May 8th… Once we are inside the car, I quietly watch as Diana drives us slowly out of the hospital parking lot. Unexpectedly, she doesn’t drive us in the direction of our home.

“Aren’t we heading home? Where are you going?” I ask her, bewildered.

“Let’s go to Din Tai Fung to eat juicy dumplings.”

“Right now?” All those intimidating explanations we just heard from the radiologist are still lingering in my ears, where am I going to find the appetite to eat juicy dumplings? But she won’t allow me to say a word against her, insisting on driving to the Din Tai Fung not far from the hospital. This restaurant chain is famous for its steamed juicy dumplings; because of the fine food and high-quality service, it has been overflowing with customers ever since it opened.

After the waiter places our steaming hot serving on the table, I look at the tiny and delicate juicy dumplings, characteristically made in the “golden 18-fold” style, and suddenly regain my appetite. Diana turns to look at me as she says, “You need to eat more. I’m going to make you tasty food at home every day until May 8th, so we can help you put on some weight - that way you’ll have the strength to go through radiotherapy.” These past few months, I've had nausea and vomiting quite often, losing around ten pounds in weight. In a painstaking effort to tantalize my appetite, Diana has been making all sorts of different kinds of delicious dishes for me at home.

I savor the juicy dumplings’ taste: The thin skin, the delicious broth, the flavorful meat filling - I eat quietly, cherishing every bite.

“I didn’t hear clearly earlier, do you remember what Dr. Almini said he’d put in my trachea to help me breathe a year from now?” The radiologist’s explanation is still swimming through my head as I eat.

“To tell the truth, when he talked about all those side effects, I wasn’t listening at all,” my wife confesses. “I’m very much at peace right now, and I don’t want to hear a word of those side effects; you still haven’t lived the fifteen years God promised me yet.”

V. Friday, April 27, 2018 - The face mask

As we're eating breakfast, Diana asks me, “Are you sure you can drive to the hospital on your own today? I can rearrange my afternoon classes and drive you there if you want.”

“It’s no problem, I can do it myself,” I confidently reply.

Over the past ten years Diana has “confiscated” my driver’s license and made herself my full-time chauffeur out of the fear that I won’t be able to concentrate my mind while driving and get myself into a crash. But a year ago she suddenly changed her mind, allowing me to drive myself to the hospital for treatment if I felt up to it. She once told me, “I need to treat you like a normal, cancer-free person.” Deep down, I know that this is her way of encouraging my desire to live.

“I’m not doing any sort of treatments today anyway, it’s just a CAT-scan and some measurements for a face mask. Don’t worry, I’ll be fine,” I tell her as I head out the door.

I reach the hospital’s underground room at 12:00PM, right on schedule. One of the medical personnel leads me to a room with a CAT-scan machine, where the staff have me take off my shirt, lying half-naked on the long table before the machine. I feel suspicion well up in my heart: I've undergone countless CT-scans in a different radiology department of the hospital, and they never asked me to undress—why am I required to leave my top half exposed in this underground radiology room?

I lie supine on the long table in front of the apparatus, waiting to be pushed into the CAT-scan machine. My gaze focuses on the ceiling above me, upon which is affixed a beautifully unique photograph: An azure sky, purple flowers in full bloom, green leafy branches, a vividly lifelike image that brings a sense of visual beauty.

Just as I am admiring this beautiful picture, a red-hot, wet object comes down over my head, plunging my vision into darkness; I can’t open my eyes, nor can I breathe through my nose or mouth. Following that I feel a hefty, heavy body press down on my head, neck, shoulders, and chest; he continuously constricts me while simultaneously using his hands to press, trying to get this burning hot object stuck as tight as possible to my body. I sink into a sense of overwhelming panic.

I hold my breath as long as I can, finally letting out a gasp once someone cuts holes in the spaces over my eyes and nose. It's then that I notice the hot thing covering me is slowly cooling down; once it begins to harden, I feel my throat jam up, unable to swallow a drop of saliva. I want to tell the people operating the CAT-scan machine, but my voice won’t come out; I want to wave my hands to signal that I need help, but discover that both arms are firmly tied to wooden boards, unable to move an inch. It feels as if I’ve been strapped to some sort of torture instrument and am suffering through countless torments, every second its own interminable ordeal.

When someone finally takes the “torture instrument” from off of my head, I greedily suck in a breath of air like someone newly-escaped from a moment of absolute terror. I am then helped down from the table, at which point I see that a thick, straight line has been painted in blue down my naked chest, with a clear layer of tape covering it. This is probably a mark the staff will be using for the session a week from now, when I’ll come back to put this mask back on and go through the radiotherapy. I sit there, battered and exhausted, and begin to cry. This is the first time in my life I’ve ever had anyone scribble lines on my naked body; I feel as if I’ve lost my dignity, fear and humiliation interweaving together to gnaw at my heart and cause a nervous breakdown.

I leave the hospital, crying all the way, making the drive home particularly difficult. This was my first time crying like this in all the ten years I've had stage IV cancer; I’ve never felt so weak as I did at this moment.

As soon as I enter the house, the melodious sound of the violin comes drifting from the music studio where Diana teaches violin lessons. When compared with the horror and fear I’d gone through in the hospital’s underground room not long before, it's like the difference between heaven and hell. I don’t interrupt her work, instead heading straight to the upstairs bedroom and cracking open the Bible to read the Book of Job. I read up to Job lamenting to God as he suffered: “They wait for death, but it never comes; they prefer a grave to any treasure. They are not happy till they are dead and buried…….Everything I fear and dread comes true.” (3) I lament to God as well: “Lord, I earnestly pray you come take me to your heavenly home soon…” Reading the Book of Job helps me to calm down somewhat; I wipe my tears and head downstairs to get started making dinner.

At dinnertime, I put my finished dishes on the table. Once Diana enters the kitchen after finishing her lessons, she says, “You’re amazing, driving home safely on your own. How was your visit to the hospital today?”

I don’t answer her, instead stepping forward to hug her tightly as I begin to cry again. She gently pets my shoulders as she says, “You must have suffered a lot at the hospital - you need to remember that right now you aren't fighting cancer alone, you have God fighting it for you. I’ve entrusted you to our Father in heaven; if he doesn’t want to continue the fight, then he’ll take you up to heaven with him.”

After we eat, I receive a call from my oncologist Dr. Pal, who says he is currently at an international cancer seminar in Prague, the capital of the Czech Republic. He feeds me a verbal tranquilizer through the phone, telling me that I have no reason to worry or be afraid, because he plans to prescribe me a new anti-cancer medication after I’ve finished with the radiotherapy.

For this world-eminent kidney cancer doctor to think of a patient while he is at an international conference in another country — Diana and I are deeply moved. After expressing my gratitude, I say to him, “Prague is a beautiful city - my daughter went there for a summer music camp once. Will you have the chance to explore?”

“I ran straight to the conference the minute I got off the plane; there’s really not enough time for me to wander outside this time around, so it’ll have to wait for next time.”  Dr. Pal has become a “frequent flyer” in recent years, constantly getting invited to academic lectures around the world.

VI. Sunday, April 29, 2018 - “You surpass them all”

11:15AM, just as Diana and I are attentively listening to a pastor named Dr. Stanley give a sermon on Channel 5 TV, my cellphone rings; it's Dr. Pal. This is the second time in three days that he's called me.

“Are you still at that conference in Prague?” I curiously ask.

“I’ve already returned. Right now I’m at the mall, shopping with my wife.”

“Whoa, you really are a frequent flyer!” I exclaim in astonishment - it seems Dr. Pal has been thinking of me regardless of where he goes these past few days.

“I’ve decided to postpone your radiation schedule, so I can have you try a new medication first.”

I can’t believe my ears, questioning him: “Does that mean I don’t need to go to the hospital on May 8th for radiotherapy?”

“That’s right,” Dr. Pal confirms from the other end of the line. “I’ve already canceled your May 8th appointment.”

Hearing that I no longer need to put on that torture device of a mask and suffer through radiotherapy is a huge weight off my mind, and I let out a long sigh of relief. Diana beside me is in tears as she says, “In the scope of things a person is capable of doing, you’re just like that woman in the Bible who bled for twelve years, having lost all hope a long time ago. All I could do is rely on faith like she did, tightly grabbing onto the edge of the Lord Jesus’s robe, praying that God can perform another miracle on you, so you can live for fifteen years.” (4)

Looking at my normally strong and tranquil wife now gushing with tears, my clumsy mind can only come up with a single line: “Many women do noble things, but you surpass them all.” (5)

Annotations:

1.    Breathe is a 2017 American biographical film, directed by Andy Serkis and written by William Nicholson. The plot revolves around polio victim Robin Cavendish and his slow recovery from the shadow of illness with the help of his wife’s care.

2.    Isaiah 38:15

3.    Job 3: 21 and 25

4.    According to the New Testament, Matthew 9:18-26: A woman with a disease that had caused her to bleed for twelve years squeezed her way through the crowd to try to touch the edge of Jesus’s robe. Upon noticing her, Jesus turned around and said, “Take heart, daughter, your faith has healed you.”

5.    Proverbs 31:29

Original written in Chinese by Joseph Chang, June 4, 2018

Translated to English by Ida von Mizener,  May 20, 2019

Edited by Joseph Chang,  May 22, 2019