After waiting too long, when I got the PET/CT report, matsutake was so hungry that he was in a trance and only wanted to eat chicken.
When she got home, she ordered takeout and waited for Lao Bu, who was still her boyfriend at the time, to come home.
The real fear came up the moment he saw Lao Bu.
Faced with the words "malignant tumors of thymus origin are more likely" on the report, the two people hugged their headaches and cried.
(Matsutake monster first PET results.) Photo courtesy of the interviewee)
Sleepless nights.
The matsutake monster was in tears, listing various things in his mind, and his chest cavity was also faintly painful because of the lurking cancer cells.
In the past 30 years, she has been a lucky and hard-working girl in the eyes of others.
Happy family, smooth academics, enviable love, and all the way in the field of venture capital.
She enjoys throwing cases big and small and dealing with all kinds of people every day.
The illness came suddenly. For the matsutake monster, everything had to stop for a while.
A young intellectual woman and a workplace elite must quickly pack up her emotions, check the literature, find resources, and be prepared to deal with it.
(Matsutake monster preparing for biopsy surgery.) Photo courtesy of the interviewee)
A few days later, the results of the biopsy surgery came out, and the pathology was reported as a rare, curable malignancy—Hodgkin lymphoma, tuberous sclerosis.
This greatly encouraged Matsutake and Lao Bu. After all, this is a rare classification of only 10% of the lymphoma families with an incidence of about five in a million in China.
But the course of everyone's illness seems to be a metaphysics. The recurrence of the illness made the Matsutake monster realize that this was a more protracted war than imagined.
Like many young people with cancer, she began a journey to find a balance between illness, her ego, and the sense of purpose that she was born into.
At the end of 2019, Matsutake Monster was transferred from Beijing to Shanghai to work.
Soon after, she noticed a lump bulging above her left collarbone without warning, the size of a ping-pong ball, not painful, but compressing breathing.
In Shanghai under the shroud of the epidemic, who runs to the hospital without any big problems? Matsutake wondered, let's observe it first, and sure enough, the lump disappeared on its own.
But soon, it swelled up again, and matsutake decided to check it.
Due to abnormal blood picture, she risked the epidemic to go to the rheumatology and immunology department and surgery department of several top three hospitals in Pudong, and still had no results for two months.
(During the epidemic, matsutake monsters were examined at several hospitals.) Photo courtesy of the interviewee)
It wasn't until I did PET/CT that I saw a string of malignant tumors lurking in my body, the largest of which was located in the right anterior mediastinum.
In matsutake's own words:
"It is like a dark monarch on a throne, surrounded by a group of small minions who have opened up the territory, and the shadows spread from the chest cavity to the top of the collarbone and neck."
Change hospitals, change departments. Matsutake and Lao Bu's path to medical treatment has also expanded from Pudong to Puxi, from chest to hematology...
The suspect was eventually identified as "Hodgkin lymphoma," a malignant proliferative tumor that originated in the lymphatic system.
(Believing that the hospital west of Lujiazui will always have a way, matsutake monster named the tumor in the body "Lu Xifa.") Photo courtesy of the interviewee)
In retrospect, the illness may have laid the groundwork more than a year ago.
Sudden itching of the skin on the legs, the whole body is like a red spider web after drinking, and the burning wants to vomit...
What makes Matsutake feel even more wrong is that he used to be full of energy and vigorous, suddenly became easily tired, inexplicably depressed, and no longer sharp. It was as if something was dragging her down.
Unfortunately, Hodgkin lymphoma is one of the very few malignant tumors with a mature regimen and a cure.
A review of the literature shows that the combination of standard first-line chemotherapy regimens ABVD and chemoradiotherapy can achieve complete remission in more than 80% of patients, obtain long-term disease control, and thus enjoy a natural lifespan.
Professor Zhu Jun of Peking University Cancer Hospital said: "If I am destined to have cancer, I will choose lymphoma"; and the most "easy to treat" is Hodgkin lymphoma.
The decision to freeze embryos is made on the sixth day after the diagnosis is confirmed.
"Of course, the meaning of life is not in passing on the generations." Matsutake knows very well that fighting for healing and survival is the first priority.
In fact, the mature first-line treatment for Hodgkin lymphoma, ABVD, did not have much reproductive toxicity, but life was impermanent, and they still wanted to leave one more choice for the future in advance.
Two days later, Lao Bu pulled the matsutake monster and pulled the testimony.
(On the day of receiving the marriage license.) A Band-Aid is attached to the biopsy wound on the neck of the Matsutake Monster. Photo courtesy of the interviewee)
In the days together, they were never trapped in a car, a house, or a bride price, and even thought that the wedding was not necessary, and all the outside voices were not more important than the two people themselves.
Matsutake monster did not expect that he had completed this life event in this way.
Some nights later, perhaps suddenly thinking of something, Lao Bu would suddenly hold the matsutake monster and say, "We will be together forever and ever!" ”
(Coming home, Lao Bu quietly shaved his head, surprised the matsutake monster with the same hairstyle, and the two kiwis met!) Photo courtesy of the interviewee)
Director Xu of the Assisted Reproduction Clinic, although he has been practicing medicine for many years and has read countless people, he was also touched by their "greasy and crooked" love, and quietly felt a little pity.
Under the care of the director, they successfully completed embryo freezing in 12 days.
In the following four months, matsutake monster underwent a comprehensive examination such as bone marrow puncture, completed 6 chemotherapy treatments, and the results of the mid-term PET/CT examination were also very good 2 points. "Like a dream".
Everything seemed to go very smoothly. Like most Hodgkin lymphoma patients, despite being in a dark tunnel, you can see the light at the end.
In fact, the danger is already close at hand. Before the seventh chemotherapy, Matsutake suddenly developed a lung infection and sepsis.
For oncology patients, there is about a 60% chance that they will encounter such a crisis.
It's a harder day than chemotherapy. Because of the infection, every night after 9 o'clock, the body of the matsutake monster will have a high fever on time, followed by the "trio" of cooling given by the doctor - taking medicine and sweating, farting plugs, and applying ice packs.
(The fever reduction process of the Matsutake monster painting.) Photo courtesy of the interviewee)
Her clothes were as if she had been fished out of the water, wet and wet, and she couldn't sleep all night. Such nights lasted for more than ten days. To monitor the progression of the disease, chest CT alone was taken four times.
"Every night I felt like I was collapsing." Except for the moment when she first learned that she was sick, matsutake "joyfully" healed all the way, and this was the first time she felt that death was actually very close.
Curiously, the source of the infection is missing, which makes doctors a little bigger.
A full set of tests for the source of infection was done, escalating antibiotics, ferocious hormones and whitening needles were played, and a 24-hour laminar flow purification system was opened in the ward, and the matsutake monster was tightly protected.
(After the white needle, her whole body was beating with pain, and matsutake found that this "hip bridge"-like movement could relieve the pain, and she imagined herself propping up a piece of sky for the bone marrow arsenal.) Photo courtesy of the interviewee)
The attending doctor, Professor Zhao, also came, a lady who exuded the style of a famous lady in Shanghai from the inside out.
Professional achievements have been admired, Matsutake also found that every time we meet, Professor Zhao's clothing accessories always have exquisite and chic small details, always wearing simple and generous high heels, even a stable white coat has become a foreign outfit.
After combing through the condition, before leaving, Professor Zhao looked into the eyes of the matsutake monster and said, "It will be fine, it will be fine." ”
The doctor's daily life is busy and boring, but the gentleness, patience and determination revealed in this whisper make the matsutake monster suddenly calm down.
Matsutake gradually realized that the doctor's attitude had such a great impact on the patient's mentality, and even affected the final treatment result. "Sometimes healing, always helping, always comforting", this is true.
Drugs and treatments save lives while constantly testing the boundaries of patients' tolerance for pain.
During the infection, the Matsutake Monster hangs water and needles almost non-stop.
It turns out that the potion is too viscous and will also block the needle tube, and when it is pressed open, it can make people collapse.
To cut off all possibilities of infection, the PICC tube (peripherally inserted central venous catheter) previously inserted by chemotherapy was pulled out, and later on several times, the matsutake monster used CVC (central venous catheter) that penetrated the central vein from the clavicle.
Both types of catheterizations serve the same purpose, allowing the drug to enter the deep veins directly to protect the blood vessels during chemotherapy.
But PICC can be left in place for months, and CVC is ready to use plugs, so each time the tube is punctured and extubated is also a test.
(To cut off all possibilities of infection, the PICC tube previously inserted in chemotherapy was replaced with CVC.) Photo courtesy of the interviewee)
After nearly 20 days of hospitalization, the situation improved, and matsutake could finally be discharged home, take hormones orally according to the doctor's instructions and gradually reduce the dose.
But every day at two o'clock in the middle of the night, she would wake up on time due to the severe pain in the bones of her lower limbs, and she could not sleep after adjusting various positions.
"How to describe it? It was like Voldemort poking my knees and ankles with his wand, pointing inside and scraping quickly on large and small bones with the tip of his fingernail. ”
This unexpected infection interrupted the chemotherapy for more than 2 months, and even affected the effect of the chemotherapy to a certain extent.
Reviewing the entire treatment process, Matsutake wondered, maybe something went wrong? Could an infection have gone unnoticed?
The "B" in the chemotherapy regimen ABVD, bleomycin, itself has the characteristics of causing interstitial pneumonia, but the standard dose is used when the drug is administered, and all patients are administered according to the body surface area, and the response should be controllable;
The "A" that may vary from person to person, the liposomal doxorubicin, has become the object of suspicion of the matsutake monster, which is a type of anthracycline chemotherapy drugs, commonly known as "red potion".
(The first time I went on the "red potion" was at night, and the matsutake monster experienced a strong hypersensitivity reaction and was unable to breathe.) Photo courtesy of the interviewee)
In fact, it is a doxorubicin wrapped in a liposome as a shell to reduce the cardiotoxicity caused by doxorubicin, but the price is thousands of times that of doxorubicin.
Studies have shown that it also has a certain proportion of hypersensitivity reactions in use, mainly affecting the respiratory system and the skin system.
So, is it okay to use only ordinary doxorubicin?
Yes.
But doctors usually tell the patient from the perspective of considering the patient: liposomal doxorubicin is more expensive, but the recent cardiotoxicity is less, and the effect of fighting large mass tumors is better.
For many patients, this is a multiple choice question with no choice.
The first time I went on the "red potion" was at night, and the matsutake monster also experienced a strong hypersensitivity reaction, and could not hold his breath.
The young doctor on duty that night said it might be related to the larger lump. So he asked the nurse to stop the drip and give the matsutake monster oxygen and hormones.
"My bed was by the window, and before I hung the water again, he came in again, and stood quiet by the window of the ward for a while, and he looked at the night view outside the window with his hands behind his back to make sure I was okay before leaving. Although I didn't see the doctor again, I felt very warm when I thought about this scene. ”
Matsutake monster judged that his dosage was still large.
Whether the "red potion" really caused the infection has not been confirmed, but the skin toxicity of the liposome doxorubicin is visible to the naked eye.
The palm of the matsutake monster's hand was covered with eczema, the skin fell off layer by layer, and the fingers were bent and cracked.
The patients who reacted the most severely, the effect of the skin of the hands and feet completely disappeared, and even the pain could not go.
In addition to applying special moisturizers, glucocorticoid creams and avoiding water, she also wore white cotton gloves as instructed by her doctor, and was teased by Lao Bu: "Hey, Mickey Mouse!" ”
(Courtesy of the interviewee)
"Maybe that's what I should have experienced, and I could see where my physical and mental resilience could extend."
Even if there is no way to travel, hold meetings, and see projects, Matsutake monster still does some post-investment management work in the hospital bed.
Like drawing, playing the piano, and reading, opening your laptop to work occasionally becomes a rare pastime of pleasure.
It was as if I had lifted my head from a lengthy treatment and taken a big breath of fresh air.
It can be seen that she loves the profession, is professional enough, focused, and empathetic.
Even during her illness, she still enjoys the sense of accomplishment brought by her work, and the happiest thing is to see the development of the invested company.
She also reflected on herself, always buried in the details in front of her, because of illness, she was able to stand farther away, with a more mature and broad vision and a more strategic vision to observe the industry.
(On the way to the hospital, the board is held by teleconference.) Photo courtesy of the interviewee)
Last December, matsutake monster first-line chemotherapy ended, but the PET/CT report unexpectedly scored only the worst 5 points.
Some of the tumors progressed faster, and she had to drop her work and treat the disease more "without distraction".
The owner of the company who has done cancer research also told her that the cancer cells are very cunning and do not be in a hurry.
After communicating with Director Yang of the Department of Biological Therapy/Oncology of a top three hospital in Beijing, Matsutake immediately decided to return to Beijing first.
After all, her family, lovers, and friends are all in Beijing, which makes her more at ease.
She plans to remove the tumor cells as much as possible through a second-line chemotherapy regimen, followed by radiation therapy in the affected field. If that still doesn't work, try more "awesome" or "avant-garde" options like autologous stem cell transplantation or biologics. She didn't want to play all the cards at once.
Director Yang's hospital excels at tackling refractory Hodgkin lymphoma. The treatment plan he gave was optimized and customized on the basis of an internationally recognized chemotherapy regimen, which was more sustainable from the perspective of treatment logic, which was quite in line with the idea of matsutake monster.
"The attending doctors I met were all very compassionate people, especially Director Yang's team. Director Yang is the most intimate and patient-conscious doctor I have ever met, he never regards patients as laymen without knowledge reserves, but will patiently explain the condition and treatment plan in detail according to the specific situation of each patient. ”
(Matsutake Monster painted portraits of Dr. Yang and the team of doctors.) Photo courtesy of the interviewee)
The condition suddenly reversed, and the matsutake monster was also very uneasy, even though the cure rate of Hodgkin lymphoma was high, but it was still full of unknown risks.
The matsutake monster, who has experienced yard farmers, made a vivid analogy -
"Every cancer patient is like a feed-forward neural network in machine learning. The confirmed outcome is fed in, through a hidden layer of each surgery/chemotherapy/radiotherapy/significant abnormal event, and finally outputs the result of complete remission/partial cure/progression. ”
Everything is in a black box.
Doctors are constantly adjusting their plans and responding to various emergencies.
For patients, treatment requires enough courage, wisdom, patience and faith.
After fighting with lymphoma for a year, "stepping on the pit" is inevitable.
Matsutake is writing a book on the path to treatment for Hodgkin lymphoma, starting with a practical guide to "avoiding pits" for patients, "which may be superficial, but useful."
(Matsutake Monster.) Photo courtesy of the interviewee)
She feels that most patients lack basic "patient education" before starting treatment. Your own experience may help those who come after you to take fewer detours. Like what:
Without delaying treatment, young patients with malignant tumors can strive for fertility preservation before radiotherapy and chemotherapy, especially for Hodgkin lymphoma, a disease that tends to occur in adolescents.
Some reactions in chemoradiation and chemotherapy will delay the on-boarding of drugs, so that the treatment cycle is delayed, affecting the efficacy. For example, abnormal liver function after chemotherapy, to rely on hanging water to restore in time, for some people just to take medicine is useless.
The dosage and order of the drug are very critical to the efficacy, but not all hospitals will strictly follow the norms of treatment, patients should learn on their own, and communicate with doctors and nurses when they cannot take into account the details of each patient.
Biopsy is an important criterion for diagnosing lymphoma, because there are Hodgkin patients who have been treated with non-Hodgkin lymphoma for several years before they are misdiagnosed.
……
On social media, she recorded many "joyful" clips of the treatment process graphically.
(Matsutake monsters show what they want to bring with them when they enter the hospital.) Photo courtesy of the interviewee)
She has no intention of becoming a medical science popularizer like "Little Yellow Bird". I just think that those who are also at the low point of life, those who are experiencing trials, if they see that someone is living a good life, they will have more courage to continue!
"We are sick people, the treatment is already bitter enough, we must find a way to make ourselves happy." 」
Matsutake always said that he was very favored, from childhood to adulthood, there was less fear and confusion, enjoyed the challenge, and was more willing to work hard to fight for and get what he wanted.
She was not willing to stop here with the meaning of life, and she always wanted to do something more, after this special day.
Radiation therapy is much more "energetic" than chemotherapy. After the first radiotherapy after the half-course of second-line chemotherapy, matsutake monster vomited, red liquid.
In fact, the radiation dose of Hodgkin lymphoma is only about 60% or 70% of other types of cancer. "It could be spicy and hot at night," she consoled herself.
"The volume rotation-intensity machine is particularly cool! Several parts, including the radiation source plane, rotate 180 degrees clockwise and counterclockwise in my spine, much like astronauts on the space station, or 3D printing themselves. ”
(The days of radiation therapy were over, and the Matsutake monster brought home the mold for the radiation treatment.) Photo courtesy of the interviewee)
However, the burning sensation of the machine illuminating the mediastinum was real and intense, and the radiation damage in the throat once again refreshed her understanding of pain.
She loves good food, but during this time she can only force herself to eat.
Matsutake said that in the midst of illness, mindfulness meditation has helped me a lot.
It allows itself to learn to look at the disease with a holistic eye, cancer is just a process that is happening in the body, a small number of cells are one step ahead of man to achieve immortality, and man is always a complete existence.
When she connects to a complete self with mindfulness meditation, she transcends scars and pain and lets go of fear of pain and the unknown.
"You'd find it mysterious and subjective, wouldn't you?" But it did make me more patient with myself and have a better mindset. ”
(Matsutake didn't pay much attention to the change in appearance, and as soon as he put on his hat, he found that the legendary moon face was himself.) Photo courtesy of the interviewee)
In addition to radiation therapy, matsutake monsters come to the hospital every week for PIC maintenance.
This is a 45 cm long catheter, one end penetrated from the middle vein of the elbow, and the other end directly to the heart deep in the upper vena cava.
She liked the area, which was a rare place in the top three hospitals, where there were few people, quiet, no sense of oppression, and she could have a relaxing chat with the nurse sister.
After the maintenance, it is the time to take the medicine, and the large and small pills are sorted into different boxes by her, protecting the heart and lungs, reducing radiation damage, preventing radiotherapy throat ulcers, and vitamins. Such a medicine, she laughed and said that she had to take three "tons" a day.
Radiation therapy is scheduled every evening at 9 p.m.
After doing PICC, it was still early in the evening, and matsutake did not want to toss home, so he ate in the small garden of the hospital while basking in the sun, and then found a café nearby to read a book to pass the whole afternoon.
(When the body feels better, the matsutake monster is immersed in reading, drawing nourishment from books and the sun.) Photo courtesy of the interviewee)
"From my home to the hospital, I have to cross the Beijing city from east to west, 60 kilometers back and forth, and I have to orienteering all day in the hospital, which is more tiring than going to work."
The security of the cancer building is strict, the patient needs to check the list when entering, and the family must also provide a nucleic acid certificate within seven days, and the security workload is really not small.
The flow of people forms a whirlpool at the gate, and everyone inevitably lacks patience, and friction often arises, but it will quickly dissipate.
Healing is the most important.
The days of coexistence with tumors go on and it's not even known when it will end. Matsutake said that after being sick, he deeply realized the meaning of "all sentient beings are suffering". And for the meaning of life, she also has a more philosophical understanding -
As long as a person is still alive in this world, it means that there are more right things happening in the body than wrong things.
Life is full of uncontrollable factors, but making every "alive" moment more meaningful is worth trying.
"Fate is no accident, choice."
Review expert: Liu Weiping| chief physician of the Department of Lymphoma, Peking University Cancer Hospital
*The content of this article is a popularization of health knowledge and cannot be used as a specific diagnosis and treatment recommendation, nor is it a substitute for face-to-face consultation by a practicing physician, for reference only.
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