Repost: A Chinese Patient's Experience Seeking Treatment in the United States

The article pushed today is a post by a netizen named “Qingxin 2007,” posted on the 19Lou forum, recounting her desperate decision to seek medical care in the United States. It is well worth deep reflection.

During the 2012 Spring Festival, her husband was diagnosed with a spinal tumor; at the initial visit the probability of surgery was nearly zero. In the end they decided to go to the United States for treatment. This is her account of that medical journey.

At the beginning of her article she says that going to America for medical care was a desperate, all-or-nothing choice in a life of despair. She wrote the post so that more people would know that “even in a desperate place, there is still other hope.”

Of course, what she wrote is not entirely an inspirational story. She also writes that the entire medical visit in the US lasted three months, during which she spent not a single day in hospital, was never given an IV drip, and took only a handful of pills.

It sounds almost unbelievable.

The following is the original text of “Qingxin 2007”:

Yesterday, while reading Mr. Shen Ji'an's post on 19Lou, I was overcome by endless memories.

First, I offer my sympathy to Mr. Shen Ji'an and his family, because the confusion, pain, and choices you have gone through, my husband and I have felt to the bone. My husband was also found to have a cervical spine tumor two years ago; we too experienced the feeling that the sky had fallen, also faced the choice of surgery, and even sought out Dr. Xiao Jianru in Shanghai.

Fortunately, both our families have come through the hardest time of our lives. The only difference is that we ultimately chose to go to America for medical care, and so the story took a completely different turn.

We had never been to the United States, had no American doctor friends, and our family was only comfortably middle-class. Going to America for medical care was simply an all-or-nothing choice in a life of despair.

I share this unforgettable experience with everyone only to let more people know that even in desperate straits there are other possibilities.

I. Onset

Like Shen Ji'an, my husband was also middle-aged, with elderly parents and young children at home; coincidentally, he also has an older sister.

Three years ago he often felt soreness in the cervical spine. At first he thought nothing of it—after all, eight out of ten modern people have cervical spondylosis. It was not until the 2012 Spring Festival that his cervical problem worsened, and sometimes he felt numbness in his fingers. So I urged him to get checked. At the orthopedics department of a certain S Hospital on Qingchun East Road, an MRI was taken; we took the films to an outpatient doctor. He studied them for a long while and said, hesitantly: “I can't judge your condition. You'd better see our Director F.”

Skipping over the various episodes of finding doctors, we saw Director F. He took the films, studied them for a long time, and said somewhat hesitantly: “This is a giant cell tumor of bone, a kind of vertebral tumor. And your location is very bad: the tumor has already eroded the second, third, and fourth cervical vertebrae. A total replacement is needed; the surgical risk is very high.”

Director F was in a hurry to go on a business trip and told us: “Admit yourself first, do all the examinations, and wait for me to come back to do the surgery. This surgery is extremely difficult; only I can do it myself.”

For an ordinary family, hearing this news instantly feels as if the sky has fallen. We didn't even have time to weep together. The next day I took leave from work (thank you to my leaders and every colleague; I will never forget your support) and wholeheartedly began gathering information and contacting hospitals. I asked only three questions: “Is it really this disease? What are the treatment options? Where is the best doctor for this disease?”

The first place we went to was a certain Z Hospital on Jiefang Road, the authority in Zhejiang Province. Three experts in spinal tumors looked at my husband's films and all agreed with the giant cell tumor diagnosis, holding that surgery was the only treatment. Because we asked directly, they were also candid: the surgery would require opening the cervical spine, removing three cervical vertebrae, and replacing them with a titanium-alloy support; not only was the surgery highly difficult and risky, but the patient's movement would be restricted afterward. Yet without surgery, paralysis awaited. The best doctor in China for spinal replacement surgery was Dr. Xiao Jianru at Shanghai Changzheng Hospital.

Doctors all over China recommended Dr. Xiao Jianru; you can imagine how busy he must be.

We finally got an appointment: number 63 in the afternoon.

I seriously did the math at the door: if each patient takes five minutes, number 63 means 315 minutes (and I was not the last one)—that is five and a half hours. Starting at 1:30 p.m., that would be 7 p.m.

And the doctor could not drink water or go to the bathroom—truly an iron-man schedule. But five minutes, for someone trapped in despair who has traveled from out of town to Shanghai, is a cruel few words.

Finally it was our turn. Dr. Xiao looked pale, with large bags under his eyes, but his manner was still mild. A circle of students and assistants stood around; an assistant hung up our films. Dr. Xiao glanced twice and said: “Spinal tumor; prepare for hospitalization and surgery.”

Because we had already researched the surgery beforehand, we tremblingly asked: “How confident do you feel about the surgery?”

“There are definitely risks, but we have done many of them.”

We asked again: “What about after surgery? What lifelong effects will the titanium alloy have in the body?”

Dr. Xiao grew impatient: “If you don't have surgery, you may be paralyzed and die in a short time. Can you still worry about how you'll feel after surgery?”

We walked out speechless. Truly five minutes.

Walking out of the outpatient building, my heart was tight. It began to rain. Just then I saw orderlies pushing gurneys through the courtyard; the patient lying on one was still on IV fluids and an oxygen bag, while family members held umbrellas trying desperately to shield the patient's head.

Suddenly, I broke down.

I could not bear such a scene. I could not put my husband in such a hospital. Perhaps in the doctors' eyes a patient is just a number, one of hundreds of surgeries; but for me and my family, he is the only one. I could not let him lie on such an assembly line. I could accept the risk of surgery, but I absolutely could not accept loss caused by negligence or disrespect.

Since the surgical method was invented by Americans and the surgical materials were made by Americans, then let us go to America for this surgery.

II. Preparation

We had been abroad, but never to the United States. In the past two years, appointment services with American hospitals had begun to appear in China, but they were extremely expensive. In 2012, there were almost no precedents to draw on.

First, we looked up which hospital to go to.

American hospitals have detailed rankings updated annually, published by third parties, comprehensively ranked by mortality, cure rate, patient satisfaction, and probability of medical malpractice.

According to the 2013 overall hospital rankings, the top three were Johns Hopkins Hospital, Massachusetts General Hospital, and the Mayo Clinic. Each has its strengths; not only do they have strong medical teams, but behind them stand enormous research institutions. There are also specialty rankings: for cancer, the best in the nation is MD Anderson in Houston; for orthopedics, number one is the Hospital for Special Surgery in New York—Liu Xiang's foot surgery was done there.

The 2013–2014 U.S. News Best Hospitals rankings can be searched on Google.

Second, making the appointment.

The American medical flow is basically this: every family has a dedicated family doctor; for any ailment you first see the family doctor, who makes a basic judgment and, if needed, refers you to a specialist for examination and treatment; if that does not work, you are referred to a more appropriate or more skilled doctor. Therefore, all specialists at large hospitals must be seen by appointment. This avoids arriving at the hospital only to find you went to the wrong department or the wrong doctor; and second, when you arrive, your doctor has already studied your case and can discuss treatment with you, saving everyone's time.

But for Chinese people this is agonizing. No Chinese doctor is willing to write a referral for you—let alone to America; even to another hospital in China is basically impossible. Our medical records were incomplete, some reports even handwritten; American hospitals require detailed examination reports, medical history, surgical or medication records, and ideally communication with your previous attending physician. For hardworking, brave Chinese people, all of this had to be collected, translated, burned to CD, or made into electronic documents by ourselves.

We chose one hospital on each coast: Johns Hopkins Hospital in the east, ranked number one overall in the nation for more than 20 years, the inventor of many departments and procedures; and UCSF Medical Center, the University of California, San Francisco, ranked fifth in the nation at the time. We chose these two because both are extremely strong—one near New York, one near San Francisco—making transportation relatively convenient.

On the visa: under the normal process, you should first contact the hospital, obtain the appointment letter, and then apply for a visa at the embassy. But obtaining the appointment takes about a month, and waiting for the visa interview also takes about a month—truly agonizing for a patient. Moreover, both the American tourist visa and medical visa are B2, valid for one year, with a maximum stay of six months per entry. So from the very first day we applied for the appointment, we simultaneously applied for a tourist visa. As it turned out, the appointment letter and the visa were basically ready at the same time, saving us half the time.

On communication: major American hospitals basically all have international centers dedicated to receiving international patients. The international department of MD Anderson, for example, even has a Chinese-language webpage. First you find the international center webpage, fill out the form as required, or email the designated address. It is best to have an American friend as a contact person: because of the time difference, you basically cannot answer American phone calls; a local contact ensures you don't miss the clinic's inquiries. After you submit the application, the international center assigns a dedicated person to serve you. He will ask you for all kinds of medical records, history, and examination reports—in English, of course (there are specialized translation companies on Taobao; you can shop around).

This process seems simple, but the Americans' by-the-book style is maddening. When the American hospital learned that we had had surgery in 1999, they demanded the detailed surgical report and pathology slide report. That was a medical record from 15 years ago, full of handwritten scrawl; looking for the original records in a Chinese hospital was like looking for a drop of water in the ocean. Americans simply cannot understand: this is the most important record of a life; why can't it be found?

After that lesson, every report I get at the hospital I scan and save on a hard drive; come and ask, and I have whatever you want.

III. Arriving in America

My husband was found to have a cervical spine tumor on May 7. On May 30, we finally received the appointment letter from UCSF Medical Center.

The international center scheduled our first visit for June 3; the attending physician was neurosurgeon Dr. Chou.

There was a small episode: in China we had always seen orthopedists, and Dr. Xiao Jianru was also a spinal surgeon, so we naturally assumed an orthopedist would receive us. In fact, American hospitals subdivide specialties very finely: the spine belongs to neurosurgery, and within the same department, intradural and extradural cervical tumors are handled by different doctors.

The appointment letter included not only the address, phone number, and precautions, but also the doctor's detailed CV; you can also Google the doctor's published papers and check whether the doctor has ever had a medical malpractice case.

On June 1, we set off for America. Our hearts were uneasy: we did not know how much it would cost—American medicine is famous worldwide for being expensive; nor did we know whether it could be cured, because cervical spine tumors are always linked with paralysis and death.

But we always believed that going to America for surgery, the patient would at least receive due respect, the doctor would at least have a serious attitude, and at least the world's most advanced technology was in America.

IV. First Visit

June 3 finally arrived. We took a car to UCSF; you could barely tell it was a hospital. There were no walls; it was a whole city block, and within three or four surrounding streets were its various outpatient buildings, examination buildings, teaching centers, and research centers, with free shuttles running between the areas.

Arriving at the designated outpatient building, we were looking around checking the door numbers when a slightly chubby Latino man in a shirt and tie, holding a folder, came up smiling and asked: “Are you from China? Mr. and Mrs. Lin?” This was Robert—the UCSF international center staffer assigned to us, responsible for all appointments, medical-record organization, and examination coordination. Throughout the entire treatment we did not wait in line once; everything was arranged by him in advance, and he usually accompanied us to each visit.

At neurosurgery, another Chinese-American man greeted us; he was the interpreter assigned by the international center. American hospitals require that for patients whose native language is not English, a dedicated interpreter be provided during consultations to prevent misunderstandings that could delay treatment—and this service is free.

Before seeing the doctor, we first filled out all kinds of questionnaires: date of birth, nationality, race, and so on, plus medical history, drug allergies, medication records, and even a privacy-protection agreement. After seven or eight questionnaires, an assistant came to do various checks: height, weight, temperature, blood pressure, hand strength, knee-jerk reflex, and so on.

After everything was done, the interpreter and we were led into a small room to wait for the doctor. Before coming to America, we had already looked up Dr. Chou's CV: he is a Chinese-American born in the US, a neurosurgery attending physician specializing in complex spinal surgery, an expert in minimally invasive spinal procedures, and was once named among America's Best 100 Doctors.

In a moment, Dr. Chou pushed the door open with a smile. He was in his forties, tall, wearing a well-fitted suit (all the American attending physicians we met did not wear white coats; instead the assistants and students did—I never could figure out why). He came in, shook hands with everyone present, then sat down and began discussing the condition. Although Chinese-American, Dr. Chou did not speak a word of Chinese; communication had to go through the interpreter.

After asking in detail about the onset and all current physical responses, he said to us: “I studied the MRI films taken in China. I think the most likely diagnosis is multiple myeloma. If it is myeloma, no surgery is needed; radiation therapy will do.” One sentence stunned us. We had visited three or four hospitals in China and heard the opinions of six or seven experts, but no one had ever mentioned this possibility.

Dr. Chou took out a sheet of paper and wrote down eight words: myeloma, giant cell tumor of bone, osteosarcoma, and so on. He told us that tumors in the cervical spine basically fall into these eight possibilities, and each has different treatment, follow-up, and recurrence patterns. For example, myeloma is very sensitive to radiation; he likened it to “under the light, the tumor melts like butter,” so radiation can cure it, but myeloma recurs frequently and requires long-term follow-up. Giant cell tumor of bone, on the other hand, does not respond to radiation and can only be treated surgically, but it basically never recurs. He briefly explained the other tumor types too, but please excuse my limited memory—I really couldn't take it all in.

This medical lesson was breathtaking. There was also a spine model beside us, which Dr. Chou picked up to gesture the location. After finishing, he smiled and looked around: “Any question?” After years of seeing doctors in Chinese hospitals, faced with such an explanation, we really did not know what more to ask.

Seeing that we had no questions, he continued: “The most important thing now is to determine the tumor type. We'll do a biopsy as soon as possible; once we have the answer, we'll discuss the next step.”

Then he asked my husband: “Does it hurt now? Do you need me to prescribe painkillers?”

This question moved us deeply. In Chinese hospitals, few doctors actively ask about the patient's feelings—perhaps because there are too many people, perhaps because doctors are too busy, perhaps because Chinese people are exceptionally stoic. But as a patient and family member, having a doctor care about your feelings and actively help relieve your pain is immense respect and comfort.

The whole consultation took about an hour and cost 500 US dollars. Because we had no insurance and paid cash, we got a 40% discount, paying 300 dollars in the end.

V. Biopsy

Scheduling the biopsy showed the great advantage of the international center. No registration, no queuing, no paperwork: Robert had arranged everything and simply notified us of the time and place.

On biopsy day there was again a big production: Robert and the interpreter accompanied us, and it began again with questions and forms. (Every time we changed departments, we went through another round of questions and checks of weight, blood pressure, and so on.)

Then my husband changed into a surgical gown in the changing room. A biopsy is equivalent to a minor surgery requiring local anesthesia, with various precautions. In China, biopsies seem to be done by the attending physician during hospitalization. In America, the pathology report is taken very seriously: a dedicated pathologist personally performs the procedure to ensure the reliability of the sample.

I could not enter the operating room and could only wait in the dedicated family lounge, with sofas, TV, magazines, and coffee—just no mood. After over an hour, a nurse notified me that the procedure was over and my husband was in the recovery room. I pictured him lying in a hospital bed on IV fluids, but when I walked in, apart from an extra band-aid on his neck, there was nothing. Asked how he felt, he felt nothing at all.

As we were talking, the female physician in charge of the procedure came to the bedside with three assistants (please excuse my memory; I cannot recall her name). She first said to my husband: “You did very well just now” (actually he had just been lying face down, doing nothing). “The puncture went smoothly, and we got an ideal sample. Results should be available in about a week.” Then she went over the precautions: don't get the wound wet when showering tonight, come to the hospital if you develop a fever, and so on. Finally she took out a business card and handed it to me: contact her with any questions.

Five minutes later, the nurse told us we could change and leave. I felt strangely let down: the enormously important biopsy, and we didn't even stay in hospital for a day or get a single IV drip. The final bill, however, gave us the feeling of a real surgery: 25,000 dollars, discounted to 15,000. American hospital costs are never reflected in drugs; they are determined by the level and number of people serving you. That is why an American surgery costing 200,000–300,000 dollars is reasonable.

VI. Referral

Amid anxious waiting, we received a call from Dr. Chou's assistant. She notified us that the biopsy confirmed multiple myeloma; no surgery was needed. So they would refer us to the radiology department for radiation therapy and to the hematology department for examinations to identify the cause and control recurrence. Robert would make the appointments and notify us of the specific times and places.

During the waiting, we also began to learn about myeloma. It is actually a hematologic malignancy: plasma cells accumulate in large numbers and, after mutation, form tumors; it may be solitary or multiple. It erodes bone, commonly in the spine and ribs, but its symptoms are subtle and basic tests often cannot detect it; the misdiagnosis rate is as high as 70%.

We first saw Dr. Alexander Gottschalk in radiation oncology. His CV showed he is an expert in radiation therapy and director of UCSF's CyberKnife program. CyberKnife delivers high-dose radiation with extreme precision to tumors and can treat brain and spinal tumors, as well as pelvic cancers, in a single session.

Just as we fully expected that CyberKnife would solve the cervical tumor in one session, Dr. Gottschalk told us instead that they would use intensity-modulated radiation therapy (IMRT), because my husband's tumor was too close to the central nervous system and unsuitable for the high-intensity CyberKnife; 20 sessions of low-dose IMRT would be better. In my ignorance, it was the first time I learned that the varieties of radiation therapy could be dizzying.

Having heard so many horror stories about radiation and chemotherapy, we naturally asked about the harms: “Will radiation make my hair fall out? Will I lose my appetite?” Dr. Gottschalk could not help laughing: “Don't worry, no. At most there will be a little dryness in the throat and some redness of the surface skin; otherwise basically no effect. IMRT is a relatively safe therapy.” We asked again: “And the treatment effect?” The doctor answered affirmatively: “It is very effective for myeloma. One course is one month; after it ends, we wait another month and then do an MRI, and the tumor will basically have disappeared.”

With such an answer, we were overjoyed; the boulder that had pressed on our hearts for months was finally lifted. No surgery, no pain, no terrible aftereffects—could we have hoped for a better result?

VII. A Turning Point

As it turned out, we had celebrated too soon. Every cloud has a silver lining, but every white cloud casts a shadow.

Because myeloma falls under hematology, Robert had arranged for us to see Dr. Thomas Martin. Dr. Martin is an expert in hematology-oncology, with broad clinical research in hematologic malignancies and blood cancers, especially multiple myeloma and leukemia.

Skipping the various forms and preparations, we finally sat face to face with Dr. Martin. He is Hispanic, with snow-white hair and an expressive face; seeing him, I thought of Uncle Martin from Mars. But Uncle Martin dealt us a heavy blow.

Hearing that we had already made an appointment with Dr. Gottschalk to begin radiation, Uncle Martin frowned and waved his hand repeatedly: “No, stop for a moment. Some more tests are needed. We have to determine whether your myeloma is solitary in the cervical spine or whether it is present elsewhere in the body.”

What? Elsewhere?

“Myeloma is also called plasmacytoma. Plasma cells travel throughout the body with the blood. Therefore solitary myeloma accounts for only 3%; the vast majority are multiple. Moreover, myeloma recurs very frequently: the recurrence rate exceeds 70% within two years and over 50% within five years. You must be prepared.”

We were stunned again.

“But don't worry either. Recent myeloma research keeps producing breakthroughs. Just this June (meaning June 2012) a new drug came on the market that is very effective against stubborn cases of multiple myeloma. Several more new drugs and therapies are already in clinical trials. I estimate that within ten years the treatment of myeloma will change dramatically.”

He looked at my husband and said half-jokingly: “Maybe by the time you relapse, taking two pills will cure you.”

Is this supposed to be comfort?

Resignedly, we began the tests: blood draws, urine tests, and a bone marrow aspiration.

The bone marrow aspiration was done in the examination room of the hematology center by a male nurse. American nurses are of two kinds: general nurses and specialist nurses. Specialist nurses must pass specialized exams, have particular professional skills, and some even have prescribing privileges. The nurse who did the bone marrow aspiration was a specialist nurse; he inserted the needle near the coccyx. When done he asked, “Does it hurt?” The answer: “I felt nothing.”

Well, are you from the “planet of few pain nerves”?

Another important test was PET-CT.

This is the examination that has been hyped all over the internet. Some Chinese hospitals have introduced it; in Zhejiang province it seems only the First Affiliated Hospital of Zhejiang University and the 117 Hospital have it, costing 7,000 RMB per session and not covered by insurance. PET-CT can detect millimeter-level tumor lesions with 95% accuracy. It scans the whole body and reveals all lesions in one pass, which other examinations cannot do. But the harm is also obvious: beforehand a sugar metabolite is injected intravenously to label tumor cells; this substance is radioactive and harmful to the body.

My view is that using PET-CT as an annual routine physical is courting death. But if MRI or other routine tests already suggest a tumor, then by all means do it; after all, PET-CT is more accurate for cancer than other tests, and that bit of radiation is negligible.

An American hospital charges 7,000 dollars per PET-CT, and the procedure is the same as in China (well, the machines are made by the same company).

Can I complain here about American nurses' IV skills? My husband's veins are so thick, yet they stuck him twice and still missed, and blood ran down his whole arm. He kept saying sorry, and I shook my head watching. They really should see the infusion room at a Chinese children's hospital: the deafening crying of children, crowds of parents, veins so fine you can barely see them, and the nurses still get it in on the first try. In your shoes you'd probably have fainted long ago.

VIII. The Verdict

While waiting for results, we received a call from Uncle Martin's assistant, saying the doctor had prescribed two medications and asking which pharmacy near us we used.

It turned out that in America, Walgreens and CVS are both pharmacies and large chain supermarkets, found everywhere in cities and countryside. The doctor sends your prescription to the supermarket you designate, and you go to the counter, give your name, verify your identity, pay, and pick up the medicine. American drugs have no outer packaging; they come in uniform orange translucent cylinders with instructions stuck on. The pharmacist at the pharmacy also goes over the contraindications with you.

Two medications, just over five dollars in total. Compared with the consultation fee, it is negligible; no wonder American doctors don't like prescribing drugs and hospitals even don't have pharmacies—if they relied on selling medicine, they'd have starved long ago.

The day of the verdict finally arrived. We came again to Uncle Martin's office. He said with a beaming smile: “You are the 3% case: a solitary plasmacytoma, with the lesion only in the cervical spine. This time radiation alone will solve it.”

Hooray!

“But as we discussed, myeloma recurs very frequently, so you must have regular check-ups.” Uncle Martin winked.

“I've found a local doctor for you; you can go to him for check-ups and email me the reports regularly. If there's any problem, come back anytime.”

He handed over a note with an email address and name; we saw at a glance that it was a hematologist at the First Affiliated Hospital of Zhejiang University, and immediately felt at ease.

IX. Radiation Therapy

We returned to Dr. Gottschalk.

My husband was to receive intensity-modulated radiation therapy (IMRT).

It uses CT and MRI to create three-dimensional images of the tumor and surrounding tissues; based on these images, the direction, shape, and intensity of the radiation beams are controlled to ensure that high-dose radiation is delivered to the tumor while minimizing potential damage to healthy tissue.

UCSF Medical Center has performed IMRT since 1997. It has two types: linear-accelerator IMRT, with up to 25 fixed beams; and serial tomotherapy, in which the machine rotates around the patient, delivering radiation from multiple angles. IMRT can treat brain tumors, breast cancer, gynecological tumors, head and neck tumors, lung cancer, and prostate cancer. I'm not sure which hospitals in China have it.

Preparation for radiation: my husband lay on the treatment table while positioning data were taken, and a hard green plastic mask covering the head, neck, and shoulders was custom-made for him. Every subsequent visit, as long as this mask was on, he could not move, ensuring the accuracy of the radiation position.

My husband's radiation totaled 20 sessions, once a day, five days a week, with weekends off.

At the first session, he came out in less than fifteen minutes, and I was greatly startled, thinking something had gone wrong. The doctor said it was already done. In fact, the actual irradiation each time takes only two or three minutes; more time is spent lying down and putting on the mask.

So we spent more time commuting back and forth between Silicon Valley and San Francisco, like going to work every day, spending two or three hours to go to the hospital for a few minutes of radiation. We got familiar with all kinds of transport in the Bay Area and saw all the scenery along the Caltrain line.

Over the 20 days, a doctor would come see you and ask, “How are you feeling? Is there any discomfort?” My husband's answer was always “Great.”

In fact, apart from around the tenth session, when he felt his throat a little itchy and a patch of skin on his neck turned a bit dark, he felt nothing. At one point I even doubted: really, just lying there a few minutes every day and the cervical tumor is cured?

X. Recovery

The 20 radiation sessions ended, costing about 50,000 dollars.

Robert scheduled an MRI for a month later; that would be the real test of the radiation's effect.

Time flew. At the end of August, we returned once more to UCSF and to Dr. Chou's office. Well, everything began with him and ended with him. In America the attending physician bears responsibility: the first doctor who sees you is fully responsible and judges the treatment outcome.

Dr. Chou pulled out two MRI films, one just taken and one from three months earlier in China. He pointed to the corresponding locations and showed us: “The tumor has clearly shrunk, which means the radiation was very effective. This process will continue until the tumor cells are completely inactive, forming a scab-like remnant.”

“The tumor eroded the cervical bone, so there are cavities in the second, third, and fourth cervical vertebrae. Fortunately, human bone has a self-healing capacity; it will take about two years to recover. In the meantime, you need to take calcium tablets and avoid impact sports like rugby and skiing.”

“Which calcium tablet is best?” “Calcium is a very common supplement; just make sure your intake is 800 mg per day and that it contains vitamin D. The brand doesn't matter; you can buy it directly at the pharmacy—they're about the same quality.”

After these instructions, Dr. Chou took out Dr. Martin's medical orders. I don't know whether it's because the consultation fee is so expensive (each of our three attending physicians cost 500 dollars a visit), but the doctors are very cautious when they see you. Things like scheduling check-ups and picking up reports don't require a face-to-face visit; they can all be handled by phone, email, or at another doctor's office.

Uncle Martin's orders took our breath away. He had not only written a detailed letter to the Chinese doctor describing the condition and treatment, but also listed a table notifying us of all the tests to be done at three months, six months, two years, and five years—concise and clear.

At the end of the letter he left his email and phone, saying: “Contact me anytime with any questions. I will continue to follow the patient's progress.” Such service, such care—at last we understood where a harmonious doctor-patient relationship comes from.

What moved us was more than this.

Over three months, Robert had become like family. In a Chinese hospital, no matter how good your connections, you could not get what Robert did. Going to a new department or seeing a new doctor, he accompanied us; all examinations he had booked in advance so we never waited; all expenses he summarized for us, so we could see the doctor first and pay later.

By the time we prepared to return to China, Robert had copied all the examination reports, treatment records, doctors' orders, and medication reports for our files. Most unexpectedly of all, all of Robert's services were free: he is an employee of UCSF Medical Center's international department, and this is an extra service the hospital provides to international patients.

The entire American medical visit lasted three months. We spent not a single day in hospital, never had an IV drip, and took only a handful of pills; we felt almost no pain at all. The cost was over 70,000 dollars, about 450,000 RMB.

XI. Follow-up

Two full years have passed. We returned to China and to our normal life. Following Uncle Martin's instructions, we have had regular check-ups at the First Affiliated Hospital of Zhejiang University, step by step. So far everything is fine, and my husband is completely normal.

The American medical experience is a precious part of my husband's and my life. Looking back, it often feels dreamlike: we had once prepared to face a trial of life and death, once prepared for long future suffering, yet on the American journey it was resolved without a moment of agony. This was an outcome I did not dare ask for even in my daily prayers.

Of course, I do not know what would have awaited us had we stayed in China and continued treatment. It was not until I saw the post To Live: Six Months of Life-and-Death Joys and Sorrows that I felt I saw the other side of the coin. I cannot tell whether Mr. Shen Ji'an and my husband had the same disease, nor can I know the gap between Chinese and American medicine. I only want, through my own firsthand experience, to tell everyone that even in desperate straits there is hope everywhere.

Of course, we cannot expect every patient with a difficult disease to go to America for treatment. But understanding others' treatment methods, learning about their cross-departmental diagnostic process, and appreciating the reasons for their harmonious doctor-patient relationships are helpful to every one of us.

Before posting this, I hesitated again and again. I feared being seen as too high-profile, as thinking that money is almighty. Going to America for medical care was merely a glimmer of hope we could grasp in despair. In fact, in the face of major illness, money is not the most important thing; your judgment and choices are. Each of us should, starting from where we are, make the best choice we can.

For example, going to America might also cost an enormous sum yet still fail to cure. If faced with such a result, I would accept it calmly, because I would have done everything possible. Perhaps in America the medical costs are so enormous that we might have to go into debt; I would not hesitate for a moment, because compared with money, a person is far, far more important. This is not a question of right or wrong; it is simply my choice, and I will take responsibility for it.

Thank you to everyone who read this post; all 90-some replies were blessings and warm words, which is truly rare online. Thank you all for your support!

I share my experience with everyone; if it gives even a little inspiration or help to someone in need, I will be more than satisfied!

Heated discussion among overseas Chinese about this article:

Netizen 1: This article is very well written. A few years ago I had a mastectomy for breast cancer and experienced America's excellent medical system. From the first family-doctor visit, through various tests, to diagnosis, to completing the surgery, the whole thing took only ten-odd days. I am just an ordinary patient, with no connections or acquaintances in the hospital and no red envelopes given. The doctors and nurses not only examined and treated me but continuously cared for, guided, and comforted me. I am very grateful.

Netizen 2: A genuinely heartfelt, excellent article! I have sought care at Peking Union Medical College Hospital and at a Florida hospital; only by comparing did I know the difference. I once told friends: the best service in America is provided by doctors; every doctor I know smiles and is kind and patient, making seeing the doctor a warm memory. My heartfelt thanks to my doctors, and blessings to all doctors! But of course there are exceptions. I met two Chinese-American doctors: one from Beijing, one from Taiwan. The former spoke fluent Beijing dialect and was a she; the latter was a Harvard graduate and was a he. My goodness, their tempers were terrible, as if your being sick were a crime, a fault, as if you owed them. They lectured you at every turn. I simply walked out and switched doctors. So I can't help drawing a conclusion. It was bad; I won't say more.

This article is good; let someone who has been there say it: it's true! And thank you especially for giving me the expenditure information. I had no idea. After more than ten years, I'm afraid it has already exceeded a million.

Netizen 3: This experience is precious. I have fortunately been through all the stages and all the methods—even more than her husband, with chemotherapy added and hospitalization added. Because my insurance was excellent, I didn't pay a cent throughout the whole process, including two years of special food; that is, for two years I didn't pay a cent for meals. Because it was all free, I never expected the costs to be so high. Truly something to be thankful for. Speaking of doctors, I feel the same. American doctors really are angels. Over time you become deeply attached to these doctors; when one leaves the system, you feel very sad. But the next one is still good. There is nothing to complain about. It has been over ten years since my cancer; doctors have come and gone, and I've been through more than twenty of them. Truly every one was good, regardless of ethnicity.

Netizen 4: Bless you! This lady is like someone who has lived in America for over ten years—at least her English is excellent. Seeing a doctor in America is just like that.

Netizen 5: Most Americans are bad at needle insertion. I have personally needed two or more sticks on many occasions; at most seven or eight, both arms purple. American nurses strictly follow procedure but won't put in the effort to practice; their basic skills are poor. Standardized processes cannot replace diligent practice. With technique that poor, all they can do is be nice; when they miss, they keep saying I'M Sorry.

Netizen 6: Written very truthfully. I have had this kind of experience in America too: as long as you are the patient, once you enter the hospital the family stands aside. The nurse and interpreter are the link between patient and doctor. They won't let you walk a step. How to put it—besides treating you, they also let you enjoy the experience. Being sick in America is also a kind of luck!

Netizen 7: A Chinese patient's experience seeking care in the US, very real. Here I share a similar experience: a few years ago a doctor friend of mine called from China. During a conference visit to China, an MRI diagnosed a thoracic vertebral tumor; several Beijing hospitals said he needed exploratory surgery and that he'd have to pull strings. My friend is a Canadian citizen working in the US with health insurance. For over a year he had had back pain, but his family doctor thought nothing of it and refused to refer him. I had him email me the films, and a radiologist looked at them and thought two possibilities: metastatic tumor or myeloma. A biopsy was needed; surgery was not appropriate. I then called a department chair at a major hospital where my friend worked, and he gave me excellent advice: have your friend return to America and go directly to the hospital emergency room; the ER doctor will request specialist consultation, and biopsy is mandatory. This way you avoid the appointment queue. Sure enough, my friend followed the "expert's" advice and immediately returned to the US, was admitted through the ER, and within a week the diagnosis was clear. Unfortunately he had widespread metastatic adenocarcinoma of unknown primary; survival after diagnosis is generally about three months. But if he had been opened surgically, he would probably never have gotten out of bed. In America he received very humane standard anti-cancer treatment plus TCM treatment, survived over eight months, and maintained good quality of life and dignity. At the end he expressed no regrets about his life and wished to donate his body for pathological-anatomical research. I even presented this case at an NIH conference on "Cancer and Chinese Medicine," in memory of the deceased and to illustrate the limits of both Chinese and Western treatment. (A pathologist's advice.)

Netizen 8: China's medical resources and quality are both insufficient, and the distribution is very unfair: the well-connected enjoy the best care, while ordinary people who want to see a good doctor queue in long lines and are batch-processed by a limited number of good doctors. To make as much money as possible, doctors see very many patients but spend very little time and energy on each, and there are frequent misdiagnoses and various screw-ups. Unless you are a Party official or extraordinarily rich, no one will spend any time thinking about your case.

For a serious illness like this, the Hangzhou doctors on the one hand misdiagnosed, and on the other hand, without even a biopsy—autopsy—saying immediately that major surgery was needed—this is murder!

America must have procedures, with a strict legal system forcing doctors to adopt cautious, rigorous diagnostic methods. Dr. Chou, even though he did not misread the MRI, still insisted on a biopsy to make sure before radiation; that is a matter of attitude. Misreading films is a matter of Chinese medical-school teaching quality and the doctor's personal level.

Netizen 9: Thank you, OP, for this excellent article that says what I have long wanted to say; everything you say is fact, 95% matching what I experienced. Thank you for speaking my heart, and thank American doctors and medical care. I am also moved by your love for your husband and your wisdom in coming to America for treatment. Bless you both with everlasting love, health, and long life. Moreover, if you had rashly undergone a cervical replacement surgery at home, the consequences would be unimaginable; the whole treatment course, plus various inexplicable fees and expensive imported medications, would not have been cheaper than America, and the patient and family would never have felt the minimal suffering and the broad respect they felt. In America, the cost is worth the money; that is where I feel you were very wise, OP.

If readers are interested, they can continue reading the account written by the other friend with the same disease mentioned by the OP; the two pieces form a tremendous contrast, in humanity's struggle with death in the face of illness…