Gray Zone: How I Live With Lymphoma
"My head hurts. It must be brain cancer!" - There is a type of people who are just looking for oncology. Carcinophobia is the scourge of our time. We see more and more frightening pictures with bald thin people, fees for fabulous sums of treatment, famous people dying of cancer. All this instills the idea that the disease is somewhere nearby and can appear to anyone at any time. I was a person who diagnoses lung cancer in my cough, and intestinal cancer in my stomach pain. So it was until I really got sick.
I manage the center of the English language "Wake Up", where I also teach. I opened it in order to combine what I love: languages and travel - so we go with our students on budget trips around the world, speaking only English. In the last of these trips, I drew attention to the painful shooting in the pelvic bone. We were in Paris then, everything had to be perfect: France, great weather, favorite students and work. But no, I diagnosed sarcoma in myself, and I informed my friend and part-time student about it. He said it was hypochondria. It hurt me a lot: does he really think that the disease cannot touch me or him? I replied that in many people the disease is diagnosed in the later stages, they live with the disease, not knowing about it and ignoring the symptoms. The irony is that I myself was such a person. No, I did not have sarcoma. But there was an aggressive and very rare form of lymphoma.
Lymphoma is a cancer of the cells of the lymphatic system. There are two large groups of lymphomas: Hodgkins and non-Hodgkins. In Hodgkin's lymphoma, a tumor arises from lymphoid cells — they form clusters in lymph nodes, and in non-Hodgkin lymphomas, they also form in organs such as the spleen, stomach, intestines, and lungs. I have a gray zone lymphoma, the third stage, it is rare, because it shows signs of both groups, as if they were two lymphomas at once. This complicates the treatment.
One evening, after we returned with the students from the trip, I felt a burning sensation under the collarbone, which later developed into severe pain. I had other symptoms for a long time that I didn’t pay attention to: the temperature was constantly low, I was terribly tired and I woke up wet at night, as if I had been doused from a bucket. At first, Google decided that I died of a heart attack, and then I remembered that the people in the place where I felt pain had lymph nodes. And then the search engine is filled with the words "lymphoma."
I, like many, were not lucky: at first I was given a wrong diagnosis, because of which I lost a lot of time. I went to a therapist, whom I learned through my relative doctor. The therapist heard that I was a vegetarian and said that it was me who “brought herself with her cucumbers”. Therefore, they treated me for another, until I decided to change a specialist.
Meanwhile, a swelling appeared under my collarbone, and I went just in case to have an x-ray. I went to the clinic as an almost healthy person, and I left with suspicion on oncology. The radiologist examined me and said that I should have done a CT scan. Everyone in the queue waited about twenty minutes for tomography results, but they asked me to come in an hour. An hour later, I, unlike the others, were asked to go to the office, and the girl began to speak with quotes from Doctor House: “very dangerous,” “lymphoma,” “running into oncology,” “chemotherapy,” “biopsy,” “PET -CT with contrast. "
The therapist heard that I was a vegetarian and said that it was me who “brought herself with her cucumbers”
Twenty minutes before, while I was waiting for results, I drank coffee with a friend and we discussed how I would react, tell me now that I have cancer. And now they tell me that I have something very similar to oncology, and I smile, nod and politely thank the girl. Later, I realized that I was really incredibly grateful to her: she called friends and found out which doctor and where to go. If I had not followed her recommendations, but had gone along the beaten track of polyclinics and bureaucracy, then I would have a great chance not to live to see the treatment. My diagnosis was confirmed on December 30, 2016, congratulated on the coming and let go home for two weeks. While the country was resting, I waited for a meeting with a chemotherapist and spent the entire holiday weekend with a "joyful" question in my head: "Do I google what the bedsores look like or do they not threaten me? Do people even get out of bed when they treat cancer?"
I was promised a very aggressive chemotherapy. Usually "chemistry" is a dropper for five to ten hours. In my case, this meant a lot of droppers for almost a hundred hours in a row. "Tune in," they told me. At first, I was cheered by the fact that most of the patients in oncology had hair - but no: I had the so-called red chemotherapy, the most toxic, - for three weeks my father ran after me with a hair cutting machine until the hair left me. Due to the aggressiveness of the tumor, I had a complication in the neck - through the neck I was injected with a catheter exactly to the right atrium. The procedure is not the most pleasant, and the result looks like that no Halloween costume is needed. Then the catheters were placed under my collarbone.
Among the side effects of one of my medications, the very first on the list was the lethal outcome during the administration. Therefore, I spent the first day in the hospital for seven hours waiting for my death, until I wanted to go to the toilet. Then I thought that maybe people exaggerate the horrors of cancer treatment. I am often asked why I am treated in Russia. The answer is simple: because here I am treated the same way as I would have done anywhere in the world. I consulted with a wonderful hematologist from Germany, she confirmed that. The only difference is that I receive mainly Russian-made drugs. As you can see, everything is fine with me.
Another thing - the question of diagnosis. I managed to see a lot myself and during the treatment I had heard plenty of terrible stories. Conclusions were born a few. First, you must either have a connection with good doctors, or you should be lucky. I was lucky, I am very grateful to those who told me where to turn and what to do. Now I try to help the same. I really respect the work of doctors, but, unfortunately, when in the civilized world, oncology is excluded first of all, in our medical institutions it is often remembered at last. And so much time a person may not be. Feel free to ask the doctors directly what is bothering you.
Another point that turned out to be extremely important in my case: the disease progressed very quickly. The girl who performed the computed tomography, suggested to me a doctor at the city oncology center - there I later underwent a half-paid examination. A week later I was diagnosed, and soon I was already receiving free chemotherapy. Russia is a country of bureaucracy, and I saw a lot of sad evidence of this. Those who did not know where to go, or did not have the financial ability to get a diagnosis for a fee, ran from the hospital to the hospital, collecting papers, until the state became critical.
This unit is very cool and tough. I know a woman who became ill back in January. I met her only when she went to the first chemotherapy, when she couldn’t even eat already - in mid-April. This happened only because she herself turned to this cancer center - before that in the other two she heard only "we will call you back." So sometimes it is better to pay for the diagnosis - for the sake of speed. In my case (at the end of 2016) it took about thirty thousand rubles, later I was offered to be treated at the same hospital for free. I was also offered treatment at the R. Gorbacheva Research Institute of Pediatric Oncology, Hematology and Transplantology after I went there for a consultation. And all this - bypassing the queues and waiting in clinics.
As for the doctors, I can not say anything unambiguous. For example, in the oncology center where I am treated, no one explained to me what I was facing, what was waiting for me, what were my predictions. In the Research Institute of Pediatric Oncology, Hematology and Transplantology named after R. M. Gorbacheva, on the contrary, I was told in great detail about the disease, its development options, and how the treatment is going on - after that I was ready for anything. But the majority of patients, according to my observations, do not want to know anything, it is easier for them in the unknown, and they most often receive uncertainty. I do not think this approach is correct, but I think it all depends on each particular case.
I also noticed that the opinion of the patient is usually not asked. I trust my doctors, but I know situations when the fact that the doctor had little contact with the patient led to sad consequences, because the doctor did not know that the patient was taking any medications, or about his past. As for communication, in relation to me, everything is correct and tactful. But I heard different stories, so in my situation it is impossible to judge everyone.
Among the side effects of one of my medications, the very first on the list was the lethal outcome during the administration. The first day in the hospital I lay for seven hours awaiting death
There are still a lot of myths around cancer. I was lucky to be born and live in St. Petersburg, I heard that in the regions things are worse than here. First, the appearance of patients. Many people mistakenly believe that hair falls out of the disease. In fact, this is due to the treatment of highly toxic drugs. Until I was bald, my hair was pink and everyone didn’t care. Now I'm bald, sometimes it attracts attention, but no one pokes a finger. It was very nice when one day the grandmother in the queue for hospitalization in oncology asked: "But the bald head - is this fashion now?"
Secondly, the prejudices about the appearance of the disease. I was asked several times where I “picked up” cancer - such questions speak about the lack of information about the disease in our country and the unreadiness of people to face it. Thirdly, there is a tacit axiom "cancer means painful death." This is another reason why I keep an instagram page: I want to show that people live, work, rest with a disease and, most importantly, can cope with it. There are situations when a person, for one reason or another, starts treatment late, or treatment does not help and you need a more difficult and expensive one. But most of those I know coped with the disease the first time.
The fourth myth: cancer treatment is necessarily very expensive. Many people go abroad for treatment - it is expensive, but sometimes necessary, and this is a personal right of everyone. Sometimes free treatment in Russia has to wait longer because of quotas - but sometimes there is no waiting time, and then you have to resort to treatment at your own expense. When I went to two oncology departments, I was immediately offered free treatment in the hospital. Moreover, sometimes I search the Internet for information about drugs that I get with chemotherapy in order to read contraindications and side effects. So I learned that I was given the latest and very expensive drugs. I paid only a part of the diagnosis and some cheap drugs for a hundred or two hundred rubles. I thought I was lucky, and probably this is because I have a rare disease. But I can say for sure that I have not yet met people from whom money would be drained for treatment - most patients also paid for diagnostics in order to speed up the process. It is worth mentioning charities that perform tremendous work to help the sick - they often incur certain expenses.
As more people learned about my illness, my friends advised me to take an instagram profile to tell everyone how I was doing. I did so - and suddenly strangers began to support me. Those who are afraid of oncology, wrote with questions. Those who only diagnosed it, began to seek advice. So, the account has grown into a global idea: telling the world about cancer so as not to frighten, but to inform in a funny way. For people to see how the treatment, communication with doctors, formal procedures. So that they adequately relate to their health: for example, if something bothers them, instead of questionable sites they turn to doctors, do not hesitate to ask exciting questions. I also wanted to support those who were in a similar situation, I wanted to answer the questions that I once had, to show that all this can be tolerated with humor.
Talking about my illness, I learned more about her myself. So I learned that people with some types of blood cancer or other serious diseases of the hematopoietic system need a bone marrow transplant, and this is their last chance. When the army of support from parents and friends expanded to a large scale, I decided that it was time to tell people about a simple but extremely necessary opportunity to help seriously ill patients - about bone marrow donation.
When we hear about a bone marrow transplant, pictures of a spinal cord or a hole are drilled into the head. It is a myth! Bone marrow is one of the elements of our hematopoietic system. People with severe forms of blood cancer or other diseases associated with it, as well as those who have suffered bone marrow transplantation. Owners of healthy bone marrow can help others. In Russia, the base of potential donors is very small, so they usually turn to German. It is incredibly expensive, besides it is much better when a donor from your country, with the same genetic features.
If you want to become a donor, you need to come to the clinic, where you can donate blood for typing for bone marrow donation. It feels like a normal blood test - just nine milliliters. But this is a very expensive and serious genetic analysis, and you can pass it only if you do not have and have not had serious diseases. If there is a genetic twin in the world that needs a transplant, they will contact you to make sure you don’t change your mind and invite you to a free full medical examination.
If everything is great, you will be offered two options for donation. As far as I know, the first in Europe is considered obsolete and is used according to special indications: the bone marrow is taken under general anesthesia through a puncture in the pelvic bone, and after two days the donor rests in the hospital. The second way is to take medicine for several days, which throws the cells contained in the bone marrow (stem cells that give rise to the rest of the blood cells) into the blood. After that, on the appointed day, you need to come to the doctor - you will insert needles in both hands in the crook, as in a normal blood test. From one hand through the tube, the blood enters a special device, where stem cells are filtered out, and the rest of the blood is returned to the human body through a tube on the other hand. After sitting for five hours, watching your favorite movies or thinking about high, you can go home. Bone marrow will recover in a week or two. In this case, the person whose life you are saving, the blood type and the rhesus will change to yours.
I'm still in the process of treatment, but I can definitely say that despite everything, I am grateful to life for such an experience. I began to worry less and fear in vain. I am amazed how much good there is in the world and how many people are willing to help for free without even knowing you. People are actively responding to donation information, want to know more about it, and I am incredibly pleased. The disease brought me closer to my family and my dear people, and also presented me with new friends. Fighting lymphoma is sometimes hard for me, but everything can be endured - especially since I have wonderful doctors whom I trust. The positive experience I received in this battle is priceless.
