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

My Oncologist Dr. Sumantal Pal

                      

I. He is a Research Doctor

I first met Dr. Sumanta Pal seven years ago in a clinic on the third floor of City of Hope Hospital in Southern California. At the time, I was diagnosed with kidney cancer and had had two major operations within the past six months. Three months after the second surgery, however, my cancer relapsed. The cancer cells were like tough prairie grass, constantly rising again from the ashes of each successive wildfire. They seemed almost to be invincible in their resilience.

During the consultation, Dr. Pal suggested that I take a new drug called Afinitor, which was currently going through a clinical trial. He also gave me a booklet to read carefully at home. It was a patient consent form and authorization to participate in the trial. It also contained medical information on Afinitor.  From the first few pages, I learned a new term: research doctor or study doctor. Dr. Pal is a research doctor.

The booklet explained that the relationship between a research doctor and a patient is different from the relationship between a personal doctor and a patient. When you visit a hospital or a private doctor's office, the physician who treats you is usually your personal doctor, who chooses a specific treatment for your condition and believes that the treatment chosen will benefit your health.

Unlike a personal doctor, a research doctor is knowledgeable of new treatments through a specific research project and understands that the participants may not necessarily benefit from that project. In a clinical trial, every participant must receive exactly the same research procedure in order for the research doctor to derive meaningful conclusions. In other words, a research doctor, unlike a personal doctor who treats his patients individually, treats all patients equally and uniformly with the same experimental drugs.

This part of the booklet was rather depressing, especially where a research doctor referred to his or her patient as a "subject," which means "a person who is tested". I realized that the "subject" was actually synonymous to “guinea pig” in the lab.

II. Risk to Subject

At the time I didn't realize that not every patient in the world could find a research doctor for his or her treatment because research doctors were far fewer than personal doctors.

In addition, not every cancer patient is willing to let the research doctor treat him or her due to risks involving life and death. To mitigate the potential for court cases, the booklet contained warnings from the research doctors and new drug research and development institutes. In their view, a clinical research project entails two risks. One risk is that the experiment may not cure your illness and may even aggravate the subject's condition. Another risk is that clinical trial drugs can have mild to severe side effects, which may last for long periods of time or even threaten the subject's life. During the research phase, the medical community does not know all the risks that a new drug may bring to the human body. To put it plainly, this is telling "test subjects" that if you cannot be treated or even lose your life in clinical trials, you or your family members must consent that the research doctor cannot be sued because you have signed the consent form voluntarily.

I read on and learned about cancer drugs. Since many drugs used to treat cancer are designed to cause the rapidly dividing cancer cells in our bodies to slow down or die, these drugs can also cause the same effects in other rapidly dividing normal cells as well. These include the blood cells that help to fight infection (white blood cells), the blood cells that help blood clots (platelets), and the blood cells that carry oxygen throughout the body (red blood cells). When anticancer drugs cause a decrease in these blood cells, it is called bone marrow suppression.

The more I read the more chilling it became and the more reluctant I felt about signing this consent form. Honestly, I felt that this booklet from Dr. Pal seemed to be treating potential patients as nothing more than experimental fodder.

III. A Dialogue during an office Visit

A week later, I walked into the City of Hope Hospital with the consent form unsigned. This was the second time I saw Dr. Pal.

"Have you finished reading the booklet? Any questions you need me to answer?" He smiled politely.

I timidly asked him: "If I do not participate in this research project, how much time do I have?"

"A year or so," was his matter-of-fact reply.

"If I participate in this research project, how much time do I have?" I asked.

"Two years!" He replied.

I was sensitive to numbers because I spent many years working in our company's IT Finance and budget field. Trying to reassure myself, I asked "Are you saying that the new drug may extend my life by only one year?"

A bit surprised at hearing my question, Dr. Pal hesitated a few seconds and said: "So to speak”.

IV. A Rising Star

Accompanied and encouraged by my wife Diana and children, I finally signed the consent form, unaware that I was lucky enough to "sign" with a rising star among the world cancer research doctors.

Dr. Pal is a genius. He skipped grades in elementary and middle schools. At the age of thirteen, he was admitted to a special class in college. Students in this special class were required to complete all eight years of high school and college courses in four years.  He graduated from college when kids of his age were still in high school. At the graduation party, an unwitting professor walked to his table and asked his classmates to raise their glasses to celebrate. He stood in embarrassment and told the professor that he was yet to reach the legal drinking age.

The young man finished medical school at twenty-one and became a MD at twenty-five.  In just a few years, he has published more than 150 peer-reviewed articles that have been featured in prominent journals including The Journal of Clinical Oncology, Lancet Oncology, Cancer Cell, and European Urology.  Many U.S. pharmaceutical companies and research companies collaborated with him to bring new drugs to clinical trials. Often he is invited to speak at medical research conferences across the United States and other countries to share the results and achievements of his clinical trials.

Dr. Pal’s clinical trials resulted in outstanding achievements in cancer research and treatment, allowing him to receive many medical research awards. For example, he received research funding from the California Breast Cancer Research Institute, the U.S. Integrated Cancer Network Center and the U.S. National Institutes of Health. In recognition of his research achievements in kidney cancer, the American Society of Kidney Cancer awarded him the "Young Research Doctor Award." In support of his work on bladder cancer, Charles A. Coltman of the Southwestern Association for Cancer Research grants him research funding.

V. High Medical Ethical Standards

Dr. Pal’s superb medical skills and high ethical standards have won him the respect of his patients and their families. I met a cancer patient, Mike, in the hospital. He was a retired university professor. Like me, he had late-stage kidney cancer. His family lived in another state and every week his wife would accompany him to the City of Hope Hospital for treatment by Dr. Pal. An anti-cancer warrior, Mike had undergone 12 surgeries and participated in several different clinical trial drugs. Unfortunately, he passed away in the end.

Mike's wife told me that when they learned that the drug had no effect on Mike's cancer, Dr. Pal went to see them in the apartment they rented near the hospital, giving her a great deal of comfort. After Mike died, she took a special trip to Southern California to attend a charity dinner for Dr. Pal’s research.

This dinner was sponsored by one of Dr. Pal’s patients.  His name was Frank DiBella. He was diagnosed with late-stage bladder cancer in 2011 and was told to expect to live only three months. Desperate, he got transferred to the City of Hope Hospital under the care of Dr. Pal. He is still alive today. He said: "When I first met Dr. Pal, he was real honest with me. He told me there was not a cure for my disease but that I was not going to die in three months. He said he would keep me alive for at least four years and hopefully, during this time, more progress would be made in finding a cure. I believe that if anyone in the world can find a cure for my cancer, this person must be Dr. Pal.     

Mr. Frank is a successful accountant and has many celebrities among his clients. To thank Dr. Pal for his life-saving efforts, he organizes “Let be Frank” annual gala to raise money for the research Dr. Pal and his colleagues are doing. Many celebrities came to help out, and even our Governor Brown of California spoke at the dinner. In just two years, this event has raised $4.6 million for Dr. Pal and City of Hope to find ways to better understand how cancers develop and metastasize, better predicting recurrence, and improving treatments with fewer negative side effects.     

VI. Meticulous care of "guinea pigs"

When I signed the consent form seven years ago, I thought as a "guinea pig" in the last stages of kidney cancer, I could only live for another two years. I never imagined that I would miraculously survive five more than that under the care of Dr. Pal.

I might be one of the longest surviving "guinea pigs" associated with his research, and he shows particular care about my condition. Every time I go to the clinic, he always inquires in detail about the side effects of the drugs I am taking. To ascertain what I tell him, he will also ask my wife, who accompanies me, to see if she, as a bystander, observed any abnormalities during the previous week.

Earlier this year, my cancer relapsed for the fourth time with the cancer cells spreading to my right thyroid. Before the operation, the surgeon told me that as long as the biopsy analysis confirmed that the thyroid gland in the patient's neck had a malignant tumor, the surgeon would usually resect the two thyroid glands together because the cancer would quickly move to the other thyroid.

When the surgeon was about to raise his knife for my second thyroid resection in the operating room, he had a phone conversation with Dr. Pal and was persuaded to spare the thyroid. Even though this decision was risky, he decided to take it because he wanted me to be free from the complications of losing thyroid function after the surgery.

In order to get a better understanding of the efficacy of clinical trials, "guinea pigs" are scanned once every three months (sometimes every two months).  To these "guinea pigs," waiting days for CT scan results is an experience of spiritual purgatory. Empathizing with my agony during the waiting period, Dr. Pal always emails me the scan result a few days before the appointment regardless of whether the news is good or bad. Sometimes, he gives up precious weekend time to do so even though it is unnecessary.

Dr. Pal is not only empathetic towards me as a doctor, but also compassionate about my family. Once in an outpatient clinic, after hearing that I had a son who was interested in medical study, he offered my son an internship in his department. He encouraged him to realize his dream to become a doctor, and created a good working environment for my son to actively participate in the preparation and writing of his clinical trial paper. In the course of a year, my son participated in the writing of three different clinical trial papers. All three papers were published in medical journals in the United States. During his busy schedule, Dr. Pal also wrote a recommendation letter for my son, who was admitted to medical school this summer.

VII. Unexpected guest during despair

Two years ago, I had an unforgettable experience. It was April 2013 when my cancer relapsed for the third time after five years of taking Afinitor. Seeing the CT scan result, Dr. Pal immediately decided to let me try out a new drug that was still in the early stages of human testing. The drug, ASONEP - also known as Sonepcizumab or LT1009 - was a new experimental drug developed by Lpath in San Diego for the treatment of cancer, including renal cell carcinoma.

ASONEP  is a human type of a mouse monoclonal antibody. This antibody has been made to target or attach to a molecule called sphingosine 1-phosphate or S1P, which may be involved in cancer. 

ASONEP was designed to reduce and shrink tumor growth.

Although the drug had not been approved by the U.S. Food and Drug Administration (FDA) and the medical community had a limited knowledge of it at the time, Dr. Pal decided to try it on me because his medical research indicated some possibility that it might inhibit the growth of my renal cell carcinoma.

So I signed my consent form, but Dr. Pal kept me waiting for a week. According to his plan, during the week when I stopped taking Afinitor, my body would be able to get rid of the residual drugs to facilitate the start of clinical trials of new drugs. At the same time, the hospital should obtain the approval from my insurance company to cover the expenses of these clinical trials.

A few weeks later, the unexpected hit me. The insurance company refused to pay any expenses arising from this clinical trial. I petitioned the insurance company and my company's HR with no success. Apparently the insurance company's decision was going to kill this well-thought-out medical plan that Dr. Pal had developed for me.

Now I had no drug to take. Two months went by and I was still not able to obtain the new drug I was supposed to take a week after the plan was implemented. I was extremely worried that in the absence of any cancer suppressing drug my cancer cells would grow rampantly.  I feared that the end was near.

As one can imagine, I was in great despair.  Then one day after dinner, the phone rang.  Picking up the call, I heard a familiar voice.  It was Dr. Pal.  He was taking care of some matters in the vicinity and wondered if we could meet at a nearby sushi restaurant.

I couldn't believe what I heard. To think that such a well-known and busy physician would come to visit an ordinary patient!

Half hour later, we met at the door of the Japanese sushi restaurant, went into the dining room and sat down at a table. Turning on his laptop, Dr. Sumanta explained to me, "It's not the end of the world, we have other drugs to treat your kidney cancer". Pointing at the screen, he continued: "You can try this one, which has been approved by the Federal Food and Drug Administration or FDA. This chart is part of my report in a medical journal that summarizes the clinical trials of this drug over the past few years. The vertical bars of various heights above the parallel lines represent the number of patients and years they have survived after taking the drug. The vertical bars below the parallel lines represent the number of people who have died after taking the drug".

He moved the laptop toward me so I could have a better look at the chart. This FDA-approved drug for treating kidney cancer was called Pazopanib. The colorful charts clearly showed more vertical bars above the parallel lines than those below. That is to say, among the kidney cancer patients receiving this drug treatment, more people were alive than dead. Among these living people, most survival rates ranged from three months to a year, the longest being five years.

To dispel my doubts, Dr. Pal said in a somewhat authoritative tone: "It is worthwhile for you to try this target drug, which has the advantage of proven efficacy. The new drug, ASONEP, which the insurer declined to pay, is only in Phase II trials, and its efficacy in patients with advanced kidney cancer is yet to be confirmed.”

This half hour talk made me feel as if I was riding a rollercoaster ride.  In an instant, I was thrown into the sky from the bottom of a deep valley. It was a dizzying experience, allowing me to see a glimmer of light. When we were about to leave, I was in tears for the gratitude I felt for the doctor. Hugging him tightly, I thanked him for the visit and comfort I received and the explanation of the new treatment plan he'd patiently provided, all at a time when I had been sinking into the depths of despair.

VIII. Success and Failure

The great scientists of the past all experienced ups and downs, twists and turns before achieving break-through research results or succeeding in inventions.  It is a process requiring strong will and tenacity, regardless of success or failure.

According to a 2014 report from the American Medical Association for Cancer, the survival rate of kidney cancer patients is only 3% for men and 2% for women, the lowest in an incurable disease. This almost-untreatable disease is what Dr. Pal's research focuses on. Like the great scientists of the past, he has had successes and failures in investigating new drugs for kidney cancer treatment.

His new drug, Afinitor, for which I later got approval from the insurance company, is an example of successful experimentation. Five years after I joined the clinical trial, the drug was officially approved by the FDA. That year, Dr. Pal flew to Beijing to share the new research findings with his Chinese medical colleagues. Now the drug has been approved in China for the treatment of kidney, pancreatic and breast cancer. Many Chinese cancer patients have benefited from this medicine.

The new drug for the second clinical trial I participated in was less fortunate.

In the United States a new drug needs to go through four long clinical trial phases. If the outcome of a clinical trial is less than optimal, the new drug can fail at any of the four trial stages.

ASONEP had completed the first phase of human-safety clinical trials when I started taking it, meaning it was at the proof-of-concept Phase II trial stage. Approximately thirty-nine patients with end-stage renal cell cancer voluntarily participated in Phase II clinical trials. Dr. Pal and other research doctors in the US divided the volunteers into two groups. The first group of twenty-two, the second group of seventeen. If 11 of the 22 patients in the first group showed potential efficacy after receiving ASONEP, the 17 patients in the second group would be able to start clinical trials. I was in the first group.

In two years of treatment, this clinical trial drug ASONEP had a surprisingly good effect on me. Many of my cancers were suppressed, except for the right thyroid gland cancer whose growth rate remained significant. Earlier this year the cancer was surgically removed.

Yet other “guinea pigs” in my group were not as lucky as I. On average, they took only four months of clinical trials and then quit because their conditions were exacerbated. The ASONEP clinical trial was discontinued due to the efficacy of less than 50%. Lpath, which developed the new drug, also declared bankruptcy. I was somewhat regretful when Dr. Pal informed me about this development two months ago. After all, this medicine prolonged my life by two years, which is a record. I jokingly said to him: "Is it fair to say that I am honored to become an unprecedented case in medical history?" He thought for a moment and replied: "It is indeed".

On my last ASONEP clinical trial, I sat in a chair with an infusion tube on one arm, the liquid drug slowly entering into my bloodstream. I picked up my cellphone and took a photo of the medicine bag hanging on the infusion rack with the ASONEP label and my name.  It was in memory of the last bag of ASONEP for human clinical trials as part of medical history.

IV “Holiday” of Surprise

On the day Dr. Pal informed me of Lpath's bankruptcy, he also reassured me that he would not give up on my treatment, and had in fact found another clinical trial drug for me. The new drug was just beginning to be tested for its safety in humans. But he did not immediately get me into the first trial of the new drug. On the contrary, he gave me two months of "holiday" to allow my body to dispel the toxins accumulated over the course of many years, and for me to recuperate before I returned to the battlefield to wrestle with the cancer cells.

What a surprise! I was absolutely elated and filled with gratitude. In the past seven years, I never expected that I could have a "holiday".  As far as I knew, when the doctor informed me to stop receiving treatment, it must have meant I was hopeless and near death. The anti-cancer drugs had been killing both my body's cancer cells and its good cells as well, for the past seven years. I was physically and mentally exhausted.  What a divine gift to be able to live without drugs for two months!

I thank God for the privilege of meeting a research doctor with a noble grasp of medical ethics and innovation. For seven years, his superb medical skills, compassion and love have allowed me – who was originally expect to live only one year – to become one of the rare 3% renal cell carcinoma survivors.

Note:  This article was originally written in Chinese in December 2015.  It was translated to English on January 13, 2017. I am fortunate to have Ms. Ida Liting von Mizener and Mr. Jianming Xia help me edit and translate this article.         

Life and Death in the Waiting Room

I.                    Unfamiliar Faces in the Waiting Room

I first met Matthew a year ago in the infusion unit’s waiting room, on the third floor of the City of Hope Medical Center in South California.  Like me, all the other patients in this waiting room were "guinea pigs," patients in the advanced stages of cancer, waiting to receive clinical trial medical treatment.

It was a Wednesday morning when two unfamiliar faces appeared there: a father and his son, sitting quietly on the chairs in the waiting room. Having come here often for a long-term clinical trial, I had by this point become familiar with the faces - if not the names - of almost all the patients who came here, making these two stand out immediately. Over the past seven years, people would come and go, in and out, receiving clinical trial treatment on an average of four to six months. Afterward, one by one, they would disappear. I never asked my doctor how long they'd lived, and he will never tell me what happened to them.

On that day, having waited a good while, and looking for something to stave off my boredom, I glanced over towards the unfamiliar father and son who sat on the opposite side of the room.  The father was over fifty years old, tall with a burly physique. His son was a handsome young man in his twenties.

I wondered: between the two, who was the cancer patient? Was it the father? I often saw cancer patients accompanied by their children for treatment. However, after observing further, I realized I was wrong. I saw the father open a bottle of mineral water and pass it to his son, who, when reaching to take it, exposed a white strip on his wrist. This white strip was given to each patient at the registration desk, on which was printed their name, date of birth, and personal identity code. The one with cancer was the son.

I couldn't look away from the pair. Although they did not talk to each other, from the father’s facial expression, I could sense his strong love, heartache, and anxiety towards his son. But the son himself had an unusually calm demeanor. His eyes were bright, and he looked very composed as he sat there. He gave off no signs of being terminally ill or close to death.

That night was a sleepless one. My mind was full of images of the father and son. My heart was replete with heartbreaking anguish. I felt sad for the young man. He was in the prime of his youth, with a promising future ahead of him. And yet here he was, suffering from an incurable disease. I felt sorry for the father. He would have to bear a cruel reality: an aging man witnessing the loss of someone who should have lived long after him. I wondered, did they need someone to comfort them? Were they mentally prepared to accept the ominous result?

A week later, when I walked into the waiting room on the third floor of the hospital, I saw the pair again. Similar to the picture I saw that first time a week ago, they sat quietly, waiting for the infusion.

Suddenly, I had an urge to talk to them.

The waiting room on the third floor is usually very quiet. The "guinea pigs", who are awaiting for clinic trial treatments here, rarely talk to each other. They are reticent, each immersed in their own thoughts. Yes, when a person is near the end of his or her life, any mundane conversation will seem redundant.

To their consternation, I abruptly approached to the father and son. We introduced ourselves, and started to talk. I learned the son’s name was Matthew, and that he had the same terminal illness I did: the fourth stage of kidney cancer. When he and his father heard that I've had kidney cancer for six years, they showed interest in learning how I'd survived this deadly disease for so long.

II. Friends with Shared Destiny

Matthew and I became ​​friends in the waiting room. We had a mutual empathy for each other, and together, we were running through that metaphorical field towards our final destination. Every Wednesday when I went to hospital for my clinical trial infusion, I always hoped I'd see him. If he was not in the waiting room, I would snoop through each room in the clinical trial unit, hoping to find him, to hold his hands, to encourage him.

Every time I met this young man, who was almost the same age as my sons, I was touched by his calm temperament. He was supposed to study his favorite subjects in college; he was supposed to date a girlfriend, and fall in love with her; he was supposed to pursue his career in the workplace. Unfortunately, unlike other young men his age, he could not do any of these activities.  

I asked him how he usually spent his time. He told me his family lives in Central California. In order to get treatment at the City of Hope hospital, he had to stay at his sister’s house which was located in a nearby city.  He said that because of his illness he was unable to study and work. Whenever he felt he had physical strength, he would do some light carpentry at his sister's home. As he talked, he showed me a picture on his cell phone, of a refurbished wooden table he was working on.

The clinical trial drugs were ineffectual on Matthew, despite doctor's trying several different types of experimental drugs for him. The malignant tumors were rampant, relentlessly spreading to his lungs and other organs. Every time I saw him, I had to suppress my sadness, keep a smile on my face to comfort him, say a few words to cheer him up. I shared with him an article I wrote titled "Dancing with Cancer", hoping he and his family could get spiritual comfort by reading it. Because I know, only God can solace the souls of cancer patients who are as close to the finishing line of their life as Matthew and me.  

The last time I saw Matthew, he was lying in a single treatment room reserved for severely ill patients. A needle was injected into his arm, connected to a bag filled with clinical trial drugs. His face looked wan and tired, and he was having difficulty breathing; it seemed that his illness had gotten much worse. I did not want to disturb him, only stood in his doorway, making a ​silent sign to tell him he was in my prayer.

Since then, I have not seen him. Every time I came to the infusion unit, I always deliberately walked slowly through the hallway, probing into each room and hoping to see him there. But there was no trace of him. Like many other patients I've seen in the past seven years, he quietly disappeared.

Recently, I received two letters from Matthew’s father. I was informed that Matthew had already left this world. As we raced together in the field leading to death, it seemed Matthew had reached the finishing line ahead of me.

Matthew and his father shared the same name. Sometimes I think, this must be a very close loving family; otherwise, with father and son both being named Matthew, how much confusion must it have caused in their daily lives?

In the senior Matthew's letters, “I” and “We” were often interchanged, indicating that the texts in the letters reflected the personal feelings of Matthew’s father as well as those of his family. The second letter was not just signed by Matthew’s parents and family, but also included Matthew’s own name, making me feel as if I was reading a letter from an angel.

These two "angel letters" were full of love: the love of parents and sons, of brothers and sisters, love in the waiting room, love of the thousands of people in the Dodge Stadium towards a young man dying of cancer, and mostly, love of almighty God. As I read the letters, I broke into tears. A Bible verse came to mind, a commandment by our Lord Jesus before He was crucified on the cross:

"Love one another as I have loved you: This is my command," (John 15:12)

Yes, if there were no love, it would have been impossible for Matthew’s parents to write letters, just nine days after their son died, to a stranger they'd met in hospital waiting room.  After I obtained Matthew’s consent, I attached the two letters to this article, to express my condolences, and in memory of my dear young friend Matthew Smith.

III. The first letter written by Matthew’s father, dated 7/26/2015

Joseph,

I am sorry that it has been so long since we last reached out to you. It has been very difficult for us and our Matthew.

I am deeply saddened to inform you that Matthew's fight is over. Matthew passed away on July 16th. He has ascended to heaven and is truly at peace now.

On June 4th, after further complications from his disease, he was released from the hospital and placed in Hospice care. His Doctors determined that there was nothing further that could be done with treatments to help him. The cancer had spread further throughout his lung and chest areas that made it difficult for him to breathe and swallow.

Matthew was a trooper though and he originally decided to go to his sister’s house here in Palos Verdes. We were able to take care of him, mostly on our own, and spend precious time together as a family. It was quite difficult for him but we made some special arrangements and he got to experience a baseball game at Dodger Stadium. He was treated like a king and got to go down on the field and even meet some players. He absolutely loved it.  Matthew was a big dinosaur fan growing up and wanted to see the new movie Jurassic World. We were able to share that with him also.

As his condition exacerbated, he wanted to go back to our original home, where he grew up, and finish his time with his family. We were so blessed to be able to give him exactly what he wanted on his terms. We spent about two weeks with him just loving him and giving him the peace and quiet that he deserved. No more hospitals, doctor appointments, or treatments, just the most important thing to Matthew - his family. And it was our opportunity to say goodbye in our special way.

Matthew was so dignified and professional throughout this entire process. He never complained and was more worried about all of us than even himself. Matthew fought so hard and the last thing he wanted to do is see his nephew born so he could meet and know him. Matthew's sister Sierra and her husband are having their first baby and the due date is August 20th. Matthew wrote special messages to the baby and bought him surprises. That's right, it is going to be a beautiful boy just like Matthew. What a blessing and we just wish Matthew could have been there to see him.

This will be very special and Matthew will certainly be his guardian angel to protect him and love him with God's light. Matthew was able to handle this on his own terms. No regrets.

We miss him deeply and will always have him and his spirit in our hearts forever. He will never be forgotten and will always be part of our family as we move forward with the next generation.

I worry that we haven't heard from you and we pray that God has continued to provide you the peace and comfort during your journey. Please respond back and let us know how you are doing. You have always been so caring and helpful to us with Matthew. You were an inspiration to all of us, including Matthew, and we care about and love you. As I think I had told you before, I believe that you were an angel of God’s love that was sent to help us with Matthew.

Your love is the greatest gift of all. May God bless you and your family. And remember, that Matthew will now be looking over you and will be waiting to see you again. Take care of each other until we are all united in the Heavenly Kingdom.

Love,

Matthew & Sara Smith and Family.

IV. The second letter written by Matthew’s father, dated 7/29/2015

Joseph,

Thank you, so much, for your loving thoughts and words for Matthew. I wish we could have had more time with you so you could know how special Matthew is. He was a perfect son and brother. He lived his life with a deep respect and love for God and family. And he was such a giving person for being so young. We couldn't be more proud of the man that he would become.

It is funny that you commented about looking for Matthew in infusion unit of hospital. We actually always looked for you too. I am pleased to hear that you are still receiving treatments and we will always maintain hope for your peace and comfort.

I know how difficult your condition is for you and your family, but I want you to know how important you are to so many others who face these dreadful diseases. The work you are doing, with your writings, helps us all to try and understand how to cope with the heartbreaking situation with a pure focus on Love. Thank you for touching Matthew and our family's hearts. We appreciate you spending precious time to educate us and helping us to understand what is most important. We were able to use your love and spiritual guidance to help Matthew cope with his condition.

You are an inspiration to all of us and we hope and pray that you also receive God’s loving light to comfort you. And don't forget about Matthew. He will continue to be with you in your treatments and be an angel for you. Matthew absolutely believed that we will all be united again with our Heavenly Father.

It would be an honor for us if you would share Matthew's story on your blog and we have included some of our favorite pictures of Matthew. When you post it, can you send us a link to read it? It will be a great tribute to our loving son.

I have to share with you how our hearts ache for Matthew. We miss him every moment of the day. I had tried to convince myself that I would be ready to let Matthew go, but I was wrong. I still want to provide for him and make sure that he is safe and loved. I stare at his pictures constantly and pray for him. I have to trust my faith and know that he received his calling from God to continue his love and blessings for so many others. He will continue to make a difference in the lives of so many more now. It is just so hard not to be selfish and want him all for ourselves.

Matthew had always talked about and hoped that the clinical trials and studies on his condition would help others, especially the sick children that he would see at The City of Hope.

I also wanted you to know how peaceful Matthew was at the time of his passing. He had just given Love to his brother before going to bed for the night and both Sara and I were holding and comforting him with love. He was ready and gently passed in our loving arms. Our prayers with the Peace of the Lord for Matthew were granted.

Please keep us posted on how you are doing and if you ever need any help or support from us. I would love to come and see you, while you are in treatments, to give back to you like you have done for Matthew. I will try to check with you when I am in the area. We will continue to keep you in our prayers and always know that you are loved. God Bless You.

Love,

Sara & Matthew Smith

And your angel Matthew II