This is the eighth oral story of an occasional cure
In July, I met a family of three at Takasugi and Xia Fan's home.
It was an old neighborhood located in the southwest of Shijiazhuang, with mottled doors and small advertisements crowding the walls of the corridors.
A corner of the living room is piled with children's toys. Cabinets, sofas, coffee tables, simple pieces of furniture are a bit old, but neat and clean. Husband Xia Fan told me that these were left by the previous homeowner.
His wife Takasugi has just recovered from her critical illness and returned to the track of life, planting seven or eight pots of green plants and occasionally playing with a few swimming goldfish. In her words, it is to "find something to do" for herself.
27-year-old Takasugi has been fighting cancer for 12 years. Her life trajectory had two turning points, once at the age of 14 and once when she became pregnant at the age of 24.
At the age of 14, she was diagnosed with rectal, sigmoid colon, and small bowel cancer. The doctor told her parents that the child had only five years left to live.
But now, the alarm about a "five-year survival" is long gone.
Like other peers, she went to school, fell in love, and got married.
After marriage, she and her husband Xia Fan planned to have a child. But after she became pregnant, a string of "serial thunder" exploded in her body.
In November 2019, when she was less than 27 weeks pregnant, she had to undergo a caesarean section because of a 10-centimeter tumor in her body; after giving birth, doctors checked that she had ovarian clear cell carcinoma; during chemotherapy, only half a year after giving birth, she was tested for duodenal adenoma; in November 2020, Gao Qian had cerebral obstruction, and later examination reports showed that she had tumors in her pelvics and brain.
The woman, who was less than thirty years of age, had lost her uterus, ovaries, cervix, part of the small intestine, part of the duodenum, part of the transverse colon, descending colon, sigmoid colon, rectum, and large omentum.
Takasugi showed me the scars on my stomach, one after another, dark red, as if they were going to penetrate into people's hearts. The longest one is left over from the duodenal adenoma resection surgery, from top to bottom, throughout the belly.
Today, she is on immunotherapy. On the latest examination, the tumor in the pelvic cavity disappeared.
Through genetic testing, Takasugi learned that he was a Lynch syndrome patient. This is a genetic disease, and the probability of cancer in patients is significantly higher than that of ordinary people.
Today, we're telling more than just a person's history of fighting cancer. When the tentacles of disease penetrate into a person's body, it is not only the patient himself who is shrouded in shadow.
So we decided to experiment with dual-perspective dictation.
Another protagonist of the story is Xia Fan, Takasugi's husband.
He is a doctor and a comrade-in-arms of Takasugi's "One Trench". Under the overlapping perspectives of doctors and cancer patients' families, we not only glimpse the thrilling moments of a husband accompanying his wife to "remove mines", but also enter the complex world of a caregiver, those fragments of disorder, cowardice, loneliness and persistence.
Today, their lives have temporarily emerged from the "chain of thunder" and are on the right track.
But the tumor in Takasugi's brain was still there.
From time to time, she wonders, this is a genetic disease, can the child grow up healthy in the future? The immunotherapy drugs used have a clinical service life – two years, what happens after that two years?
Takasugi didn't want to think about death, but she and her husband would still talk about what Xia Fan and the children would do if they were gone one day.
No one knows the future, but the couple has survived together through the moment when death is close at hand. At that time, the doctor told Xia Fan that his wife would only live for a week at most.
Half a year has passed since the day the doctor gave his judgment.
Oral archives
When: July 2021
Location: A residential building in Shijiazhuang City, Hebei Province
Name: Takasugi
Age: 27 years old
Occupation: Housewife
Here's what my wife said:
"Fighting cancer is a long road"
When I was 14 years old, in a physical education class, I suddenly fell. After that everything changed.
At the hospital, I was checked for anemia. After that, I have been doing various tests, but after tossing and turning for half a year, I can't find the reason. Until a doctor said, don't do a colonoscopy. Only then did I find out that I had reached stage 4 of bowel cancer.
At that time, my stomach hurt, especially. For half a year, I have not eaten a mouthful of food and have been living on infusion solution.
I was getting thinner and thinner, and my weight fell from over 90 pounds all the way to 48 pounds. Connect your thumb and middle finger in a circle and you can wrap your arms around your arms.
After the surgery, half of my large intestine was removed. Since then I've had a fistula, a permanent fistula. In layman's terms, it is to make a hole in the stomach, pull out a small piece of intestine, stitch it on the surface of the skin, and thus excrete.
The fistula is not large, palm-sized, sealed, usually stuffed into leggings, others can not see. It is not much different from the average person going to the toilet, but every one or two days, replace a fistula bag.
When I was hospitalized, the people in the same ward felt inferior because they had a fistula, and I would tell him, you see me, there was an ostomy at such a young age, but getting married, having children, and going to work had no impact.
I also enjoyed traveling.
I kept schooling at home after surgery, and from the age of 14 to 18, I went to many places, as far away as Africa.
Photo of Takasugi traveling in Tibet Source: Interviewee
I love to travel because it makes me forget about being sick. In Shijiazhuang, I felt like a patient, but when I went outside, I felt like a normal person.
I don't like to be idle, and I always want to find something for myself to do.
After that surgery as a child, my body actually recovered very quickly, and I wanted to go to school, but my family wouldn't let me. When I was admitted to college, there was no problem in reviewing every year, and my family agreed.
I studied laboratory testing in school and interned in the laboratory department of the hospital for a year. The laboratory is biochemical, bloody, immune, and I've been in every place.
Looking back now, I could have stayed and worked, but my family felt that they had to work the night shift, and they were too busy to let me go. As soon as the internship was over, I left, and I still feel very sorry.
It's not because I like the job so much, but because I have something to do, so I don't feel that I am a person who has no value to society.
After my brain infarction last year, my reaction became slow and I couldn't work anymore. But I can't sit idle, and I always want to find something for myself.
Takasugi bought himself a reference book for the UGC after the duodenal adenoma resection Image Source: Interviewee
So I raised fish and flowers at home. Recently, I can cook my own dishes, and Xia Fan likes my egg fried rice and stewed ribs the most. I watch videos from time to time and learn to pour some new dishes.
"Hide from me, but I have feelings"
I was sick when I was a child, and one day, my father suddenly said in the hospital room that he wanted to kiss me. I felt embarrassed at the time, and I threw my head back and refused to let him kiss.
But my dad insisted, "Let me kiss you, I've never kissed you."
At that time, I didn't know I had cancer, and my family only told me I had intestinal obstruction. I always wonder if it will be good after the operation?
But after the operation, I found out, how did I have an extra ostomy? Even when I entered the chemotherapy phase, every time I had chemotherapy, I was very uncomfortable and wanted to throw up.
I took out my phone and photographed the medication and looked it up on the Internet myself. Only then did I know that I was suffering from cancer.
So, for a long time, my parents and I maintained such a delicate relationship:
I knew my condition, but pretended not to know. My parents knew I knew about my condition, but they pretended not to.
It wasn't until a liquor store that my dad told me about my condition in front of a client.
"This kid is very sensible and hides from us," he said. I was also at the table, and when I heard this, I couldn't help but cry.
Takasugi on the hospital bed Source: Interviewee
Ten years later, a similar situation happened again.
Last year, I had another tumor in my head. Xia Fan and my parents were worried that I couldn't open it, so they all hid it. Xia Fan is a radiologist, afraid that I know, every time I finish doing CT, I will make a false report to show me, not mentioning that there is a tumor in my head.
But my body could feel something was wrong. At that time, my head was a mess, and I was not interested in what other people said or did, I just wanted to lie down. I couldn't eat anything, but I knew I had to eat and eat to survive.
It was a feeling of dying.
Then one day, Xia Fan gave me a CT, and my mother suddenly said, "What about the tumor in her head?"
I realized it wasn't right and kept asking Xia Fan.
I said, what is wrong with you, you say it, I have a strong psychological endurance, you hide, my heart is blocked in panic.
He was willing to say.
I was shocked, but I knew, and I felt a big rock falling, but I felt comfortable.
"I didn't dare to love until I met Xia Fan"
Falling in love and getting married used to be something I didn't dare to expect.
Before I met Xia Fan, some people also pursued me, but considering my physical condition, I did not accept it.
But Xia Fan was different.
I remember in 2014, not long after we were together, I told him on WeChat, "You know, the doctor said I only had five years to live, but I also survived."
Because of my previous experience, I have always had a burden in my heart, but I always feel that I should tell him.
He didn't leave and stayed with me.
Xia Fan is down-to-earth, makes me feel safe, and he encourages me to love bravely.
Every time I was unwell, he was particularly nervous and immediately took me to the hospital. Now every time I take immunotherapy drugs, he also helps me remember.
In November 2019, the time I had a baby was dangerous, and the doctor informed the family before the operation to prepare them for it – neither my child nor I could live.
Later, my mother told me that Xia Fan had been guarding me at the door. "Be nice to you, treat him well," my mother told me.
In 2014, not long after falling in love, Xia Fan went to Beijing for internship and work, and we fell in love in a long distance. Every three or five minutes, I would go to Beijing to find him, or he would come back. He collected the round-trip tickets, stacked them up in a thick stack, and I said what are you keeping, he just wouldn't throw them away, saying that he would keep them as a souvenir.
Tickets collected by Xia Fan Image source: Interviewee
Although I could see it at that time, I still wondered if he would find other girls. Once I was on the phone, and the guy was in a commotion, and he said he was at a KTV, a department party, but I didn't believe it.
After four years together, it was I who offered to get married. In 2017, my family said they wouldn't get the permit first.
A year after receiving the license, I waited for him to offer a wedding. The wedding is a very meaningful thing for me, and after this ceremony, I feel that I should really follow this person in this life.
But it can't wait.
Every time I tell him, let's have the wedding, and then I put all kinds of reasoning. He just said, "Okay, okay." After that, there was no movement. In the end, I was anxious, saying that it had been a year since I got the license, and I had to do the wedding before 2019.
He said yes. In September 2018, I finally waited for my wedding.
The wedding was held in his hometown, and my in-laws helped to organize it, so I deliberately chose a forest arrangement, with many greenery and vitality. The wedding dress was also chosen by myself, and I went to several places to find a satisfactory one. On the day of my wedding, I specially brought my heel makeup from Shijiazhuang.
At the wedding, Xia Fan said a lyric of Mayday. It's his favorite group, and we went to Beijing to listen to a live performance.
He didn't sing in five tones, but at the time, I just felt so touched, and the host reminded me, and I found that my face was full of tears.
"There is regret, but only for a moment"
Before, I hadn't thought about having children, and I thought that my body would probably be overwhelmed.
Later, my peers around me became mothers, and my situation was also very stable. I even felt that I was strong, climbing, playing, working, all right, and began to think, can I have a child of my own?
I told my mom and Xia Fan that after many tests, the doctor said it was okay and I started trying to get pregnant.
I was particularly happy to see that the pregnancy test stick was two bars, and pulled Xia Fan and said, Go, let's go to the hospital to draw blood.
During the preconception check-up, the doctor found a cyst in my ovaries and he said it was no big deal. But unexpectedly, during pregnancy, this cyst grew from 2 or 3 centimeters, month by month.
When the child was 6 months old, the doctor who did ultrasound told me, "The nature of this lump in your body is not very good, or don't have a child."
But the child is 6 months old. I've even heard of his fetal heartbeat and seen him in the B-league. It was a small man, his arms and legs moving very lively.
Some children are naughty and refuse to let their mothers see it, but he is very obedient. I could see his nose and face, a little ugly, crooked.
Walking out of the B ultrasound room, I didn't tell Xia Fan and my parents about this. Other doctors say that the cyst is fine, how can this doctor say that there is something wrong? If I told them, I would definitely say don't have children. But I want to give birth to a child.
Unexpectedly, this cyst later developed into a solid tumor.
When she was more than six months pregnant, the doctor gave lung injections, hoping to promote the child's development and cut it out earlier. But after the lung injection, my whole body swelled up, my face was the same as the bun, and my eyes could not be opened. I couldn't even wear clothes and socks. On the day I was taken to the hospital, I just covered a few pieces of clothing.
The doctor decided to have the operation, and at that time, the child was less than 27 weeks old.
At 7:30 a.m., I was pushed into the operating room. At first it was half numb, cut the child out.
I lay in the operating room, conscious.
Although there was a piece of cloth that was invisible, I could feel the doctor pulling it out and turning it over, and I wanted to throw up. Every word and every tone of the doctor hung on me.
I didn't dare to ask anything, nor did I dare to cry, for fear of affecting my children.
"Give me general anesthesia, I don't want to hear it," I said to the anesthesiologist.
The anesthesiologist refused.
At 9:45, the child was cut out. I didn't see a single sight and the child was pushed away. The doctor needed to remove the tumor, gave me general anesthesia, lost consciousness ...
After that, various diseases exploded in my body like a series of thunder, and I underwent surgery after surgery. For a moment, I really thought, if only I didn't have children in the first place.
But it was only a fleeting thought.
The maternity ward was full of mother and child beds, a big bed, a small bed, only my big bed next to nothing. Every day, I could hear other children crying, and some children would cry all night.
My child, from birth, was sent to the incubator. Later I learned that he was only 855 grams when he was born, and the whole feeling was transparent, jelly-like.
He was lying alone in an incubator with all sorts of tubes inserted in his body: if his lungs were not well developed, he had to keep on a ventilator to maintain his breathing; he could not drink milk, only inserted tubes.
Children in incubators Image source: Respondents
I worry all the time about whether my child will not live.
After that, I started chemotherapy. This time, the chemotherapy was so powerful that only once, my hair fell out. But no matter how uncomfortable it was, I endured it. Every time I had chemotherapy, I held up the chemotherapy pill from the 7th floor to the 15th floor where my child was.
After 77 days, the child comes out of the incubator. The big stone in my heart finally came down.
"Tomorrow"
In 2014, Xia Fan went to beijing for an internship at an emergency center. He often told me all kinds of emergency patients and stories, car accidents, poisoning. I always asked him, is this all true, and the same as in the TV series, it is not made up by you.
At that time, I didn't expect that I would be in the ICU after 5 years.
After giving birth, the obstetric director was worried about the postoperative instability and arranged for me to enter the ICU. Every day, I lay there alone, and Xia Fan and my parents could not come in with me.
There were only other acutely ill patients around me.
An old man next to him was speechless and could only knock on the bed and call the nurse over. Once a patient is critically ill, doctors and nurses will rush in for rescue. The rescue was ineffective, and a white cloth was covered and pushed away.
On the most days, I watched 4 patients being pushed away, opposite me, to my right, to the other houses. I don't know them, but watching individuals being pushed away, heartbroken, tears in my eyes every day.
I kept asking myself, how could I be here? If I continue to stay like this, will it be me who will be pushed out one day?
After 6 days, I finally came out of it.
I've always wanted to try to live, but I can't help but die.
I am a Lynch syndrome patient, my mother, my child may carry genes, will they suddenly develop the disease one day?
After receiving immunotherapy, I am now recovering very well, but this medicine is really not cheap. I asked Xia Fan, what should I do after a year of playing? He replied that if the effect was OK, then play for another year.
But what about two years later?
If I'm gone, I want to give the child to my parents to take, but I think it's not fair, the child has no mother, how can there be no father?
I told Xia Fan that the child should still follow you, and if you want to remarry, be good to the child.
Those who are alive should still live a good life.
Name: Xia Fan
Age: 28 years old
Occupation: Radiologist
Here's what my husband said:
"We fell in love, and then we entered the palace of marriage."
The first time I met Takasugi was in the summer of 2013, when she had just entered military training.
I'm a year older than her. Our roommate met online, planned to meet offline, and pulled us both together. As a result, they didn't succeed, and we did.
I saw her in the classroom of the evening self-study, wearing a military training uniform, which was particularly beautiful. We added WeChat, everything to talk, chat and chat, naturally together.
On WeChat, she told me that she had been seriously ill and that doctors had said she had only five years left to live.
At that time, I was not too surprised, after all, I was also a medical student. She was in good health at the time, and I didn't see her as a patient.
In 2014, when I went to Beijing for an internship, she came to me from Shijiazhuang, and we went to many places together, watching movies and concerts. I love Mayday, she doesn't like it, but is willing to be with me too.
Later, when she offered to get a license and get married, I always "giggled" in my heart. Although the mouth says "yes" and should be, there will still be concerns in the heart.
I don't know what her body is like. I know she's been seriously ill, and the so-called "five-year survival" has passed, but what will happen in another five years? Ten years from now?
How do I tell my parents? If I told them that Takasugi had cancer, they would certainly not agree.
I didn't want to break up, I didn't want to, and I didn't want her to be sad. She had been through so much since she was a child, and it was hard enough.
Later, I figured out how long I could stay with her.
Photo of Takasugi and Xia Fan Source: Interviewee
But at that time, we didn't know that so many things would happen later.
"Accompany her in her fight against the disease"
In 2018, after getting married, I quit my job in Beijing and returned to Shijiazhuang.
I went to work at the hospital, and she opened a small tobacco hotel. Life is not too rich, but what you want to eat, what you want to buy can always be satisfied, and you can go out and play together when you have time.
We bought our own house, a second-hand house, not big, but with good lighting, and got up every day to soak up in the sun. This is our own nest.
But after she became pregnant, a series of "serial thunders" almost exploded our lives. She underwent surgery again and again, and I was constantly on the road to seeking medical treatment and caring for her.
After she fell ill, she closed the hotel, I still had to go to the hospital to work, just the branch, not so busy, Monday to Friday, every day is 7:50 a.m. to work, 6 p.m. to leave.
When I was free from work, I ran to the hospital where she was treated to replace her parents. If I had surgery, I would be out there. At first, no one brought the child, and my mother came from her hometown in Shandong to watch.
Successive "blowing up mines" and "demolishing mines", I now think back to that time, in fact, I can't remember the "most impressive" scene, only various fragments.
Every time there was a problem in her body, we thought, first solve a problem. Soon, the next problem arises again, and then it will be solved.
The deepest feeling is that there is powerlessness.
The day she gave birth, at seven o'clock in the morning, I stood outside the operating room and watched her being pushed in.
The day before, the hospital had consulted her with eight or nine departments. The doctor called me and her parents and said that her situation was not optimistic, and that "adults and children could not be saved" and asked us to be mentally prepared. Back in the ward, I looked up and saw Takasugi monitoring the fetal heartbeat. "Poof, poof," that's the heartbeat of life.
I stood alone at the window and couldn't help but cry.
Outside the operating room, I was still crying, and the tears came out unconsciously.
Whether she was good or bad inside, I had no idea. I was obviously a doctor, but at that time, I couldn't do anything.
"I am a doctor and a patient's family"
When I was working at the Beijing emergency center, I saw all kinds of patients, poisoned, burned.
The most impressive one was to go to the neurology ward to give an electrocardiogram to a critically ill patient. I pushed the electrocardiogram machine through the anxiously waiting family members at the door, and in the ward, a group of doctors were rescuing them.
A heartbeat on the ECG is a wave. An ECG for 20 seconds, if there is a wave can not declare the patient dead. When I went, there were one or two waves on the patient's ECG. The doctors continued to rescue. But 20 minutes later, the patient went anyway.
A straight line on the electrocardiogram, a straight line of death.
I walked out of the ward and announced his death to the families. Six or seven people immediately rushed in, wailing and crying.
I stood there, watching them rush over, listening to heart-rending cries. This moment is uncomfortable, life is too fragile.
Later, Takasugi fell ill, and I became an anxious family member waiting outside the ward.
During my internship in Beijing, I had arrhythmias and needed radiofrequency ablation surgery, and my dad came alone from his hometown to accompany me. Before the operation, the doctor said that I might be at risk of sudden death. My dad later said that his hands were shaking when he signed.
Every time Takasugi had surgery, I had to sign it for her, and only then did I realize the heaviness of my father's heart.
Especially when Takasugi signed during the caesarean section, the doctor asked me, her parents and all three of them to sign.
At that time, the heart was very heavy, because the future was unpredictable, and I didn't know if she would be able to come out safely after the operation. But I had no other way but to follow the doctor for treatment.
Discharge diagnosis after Takasugi cerebral obstruction Source: Interviewee
Last October, when she was at her worst, she suffered a cerebral obstruction and was confined to the emergency department and unable to move.
Shortly before that, she also had an intestinal obstruction, and she had not eaten for half a month, relying on nutrient solutions to support her. Later, the examination found that the tumor in the pelvic cavity had recurred, and a new tumor had been found in the head.
No department would accept her, and she had to lie in the emergency department.
A doctor came over and looked at her report and said, "That's it, let's go home and take pictures."
I was anxious, "She can't eat now, won't she starve to death when she comes home?"
I begged the doctor to cure her to the extent to which she could be cured, but no doctor accepted her.
Her uncle, who was also a doctor, said, "It's all over, don't suffer too much."
That's when I first realized the question, what would I do if she was gone in the future?
I left the hospital and returned home alone. I was the only one in the house and it was quiet. I turned off the lights, lay alone on the bed, and involuntarily cried out.
I had in my mind the images of the old days of hanging out. Play together, travel together. At that moment, I asked myself, if I knew that so many things would happen later, would I still make the choice of marriage?
I don't have many friends to say about these things, they can't help or empathize. Takasugi can still find his parents when things happen, but I can't.
This road is too lonely.
"Live your life well"
Takasugi has been recovering well recently. After receiving PD-1 treatment, the tumor in her pelvic cavity disappeared. Although the tumor in her head is still there, it doesn't get in the way, and I want to wait until she recovers better and see how to deal with it.
Since she had several serious illnesses, the family's economy is relatively tight, the family's living expenses depend on my salary in the hospital, and her parents mainly subsidize medical expenses.
Takasugi had to get an injection every twenty-one days, five thousand at a time, and do various reviews. The child is still young, milk powder money, diaper money, are all expenses. Now, we go out to eat, we buy things, it's not the same as before, we have to calculate.
But our lives have finally come out of the "serial thunder".
Takasugi with children Image source: Interviewee
If you catch up with me to rest, we will be at home together with the children. When the weather is nice, take your kids to the mall or park for a walk.
What will happen in the future, no one knows.
We try not to mention death, but it's an unavoidable topic for us.
A few months ago, she had just recovered, and we would always talk about what I would do if she was gone.
What she cares about most is her children. At first, she said that the child was brought to her parents, and later she said that the child could follow me, but I had to find a stepmother who was good for the child. As for myself, I don't have any ideas, and I'll let it happen later.
When I first started with her, I thought about how long I could stay with her and live a good life.
On the day of the wedding, I said a passage of the lyrics from Mayday's "Arbitrary Doors", which are still in my mind.
"You ask me where the world is most beautiful, and the answer is that you're around."
— Tips —
What is Lynch syndrome? 】
Lynch syndrome, or Lynch syndrome, is an autosomal dominant disorder that is closely related to cancer and cannot be prevented. There is a mutation in the mismatch repair gene in the patient's body, and this gene is innate. At present, we have clearly defined the essence of Lynch syndrome as a genetic defect in the five genes of MLH1, MSH2, MSH6, PMS2 and EPCAN.
【What are the characteristics of Lynch syndrome?】 】
Patients with Lynch syndrome have an increased risk of colorectal and endometrial cancers, and are also at risk of developing other malignant tumors, such as ovarian cancer, stomach cancer, skin cancer, etc.
【What should Lynch syndrome patients and their families pay attention to?】 】
Patients with Lynch syndrome (as well as family members) are regularly screened for specific tumors, such as colonoscopy screening for colorectal cancer, vaginal ultrasound screening for endometrial and ovarian cancer, gastroscopy screening for gastric cancer, etc.
In which populations is screening for Lynch syndrome suitable? 】
It is recommended that young (20 to 25 years) patients with a family history of colorectal cancer and patients with confirmed endometrial cancer should be screened for Lynch syndrome. If Lynch syndrome is diagnosed, their immediate family members can be examined to predict the risk of cancer, and regular follow-up and intervention can be done in advance.
The above content is from the Lilac Doctor Health Encyclopedia
Author: Dai Fankai
Producer: Su Weichu
First image source: Stand Cool Helo
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