Gennady Miller is a hero of the project "I Will Live!" Family, work, his wife's pregnancy – and a serious illness. And yet, he did it. What helped him return to normal life? How do you deal with the risk of relapse?
Gennady Miller is 39 years old. He works in the field of clinical diagnostic laboratory organization and consulting. In 2018, Gennady fell ill and was diagnosed with Waldenstrom's macroglobulinemia. Gennady told us his story of his illness and return to life.
- How did it all happen?
It happened in 2018. During the New Year holidays, I began to get sick. At the time, I thought it had to do with a common cold: congestion, ARVI, cough, bronchitis and endless antibiotics. It became clear that something was wrong. I had never been sick so often, and I had never felt so bad. I turned to a therapist - one, two, three, four, five. It was only the fifth therapist that suspected that something was wrong. She gave me an extended checkup and based on the results said: "It seems, my friend, this is a serious matter, you need to see hematologists and oncologists." That's how I got to the NMRC for Hematology of the Ministry of Health of Russia. At the very first consultation, I was lucky enough to meet Alexander Evgenievich Grachev. It was from him that I learned what was wrong. It took six months from the appearance of the first symptoms to the diagnosis.
- Is this the first time you heard of such a disease?
Yes, of course. I had previously heard that there are a number of onco-hematological diseases, but this is the first time I had heard such an exotic name. Moreover, it turned out that I am an absolutely unique “snowflake.” Waldenstrom's macroglobulinemia is a rare disease, and the appearance of the disease in patients of my age group is even more rare. I was very surprised by this.
- Besides surprise, what other feelings did you experience?
At the stage of the initial diagnosis, when I first heard the diagnosis, I experienced a very unpleasant range of feelings: first anger, then irritation, then fear. It was very unexpected for me. Due to my profession, it was a little easier for me to realize what was happening than for an ordinary person. I was familiar with a number of oncological diseases, not as a patient, but as a person who provides laboratories with the necessary equipment and optimizes work processes. Oncology is partly within the scope of my professional activity. The words “cancer” or “oncology” applied to me did not cause me shock or stupor. I remember these emotions quite well: anger, irritation and fear, exactly in that order. I felt fear not for myself, but for what will happen next, fear for myfamily. At that time, my wife was pregnant with our second child.
- It turned out that there were many changes in your life happening simultaneously...
My spouse was late in pregnancy at the time of diagnosis. Everything that happened next, I mean in the period of my treatment, on the one hand- my story as a patient, on the other hand- the story of a family that is waiting for an addition and learns news like this.
- What did you do after the diagnosis?
After the consultation at the NMRC for Hematology, Alexander Evgenievich very clearly outlined my prospects and treatment options and invited me to participate in a treatment according to the new scheme. He explained that this would be a long difficult stage, which would require me to stay in the hospital for several months. When we discussed the treatment, I already felt that it was very difficult for me to work, to perform at my usual volume and to be active at the speed to which I was accustomed. I noticed changes in my physical condition. These changes prevented me from not only working, but even doing quite ordinary household chores. I felt very bad. I did ordinary household chores with great difficulty. I couldn’t rush to the departing bus and climbing the stairs one floor felt like scaling Elbrus.
- How did you solve financial problems?
I received incredible support from my employer. I work for a large company that develops equipment for laboratory diagnostics. When I was diagnosed I informed my management. The top management of the company, namely the then CEO, after learning about this story, made changes at the level of the company's internal policy. In fact, it is a kind of social package, which is still available to any of our employees. During the six months that I was treated, the company provided me with financial support. This allowed my family not to think about their daily bread. I am still very grateful to this person. It was an example of incredible support for me, and I was very touched by my employer’s participation.
- What did your treatment involve?
I had to undergo several courses of chemotherapy. I was in the Department of High-dose Chemotherapy, and the courses themselves were done intermittently according to a certain plan. There were seven of them in the hospital, followed by autologous bone marrow transplantation, and then four more courses of supportive chemotherapy on an outpatient basis. The main phase of treatment took 10 months.
- How did you tolerate chemotherapy?
It's not easy at all. There are side effects that chemotherapy carries. They are superimposed on existing diseases, and age is of importance. Of course, it is more difficult for elderly people to endure these difficulties. When I got sick, I was a healthy, young man with a sporting background. I always kept myself in good physical shape. This helped me get through all the difficulties that chemotherapy brings. Nevertheless, this experience was not easy or pleasant.
- What was your emotional attitude towards this?
The main thing that occupied my mind was anger and the desire to do everything in my power, in terms of inner mood or psychosomatic effect. Before and after my illness, I was actively engaged in martial arts. The moment I realized that I had found a doctor who could help me, that he had a plan and knew what to do, I realized that for me, this was like a fight. Like a fight with a very difficult, strong, but nevertheless understandable, studied opponent. Yes, it may be very difficult, but you feel that you are ready for this fight. If you are properly set up to win, even if the opponent is stronger than you, even when you find yourself in a difficult situation, and when it already seems that you are losing, you can gather yourself, find strength and eventually win. That's how I felt at that moment.
- How did these same events look like from your family's point of view?
I know that it was very difficult for my wife Anna, both emotionally and physically. All the accompanying emotions- anxiety, fear and uncertainty, and there were also difficulties with motherhood for the second time. Looking back, I would like to express my admiration for her. Imagining myself in her place, God forbid. I'm not sure I could have overcome all this with such fortitude and courage, a constructive attitude to the situation, and a businesslike positive attitude. I felt my wife's incredible support at absolutely every stage of the illness: at the very beginning, when we did not yet know what was coming; then, when they found out the diagnosis, the treatment, the chances, prospects and prognosis. The realization that she was behind me, that she was: loving, caring, ready for whatever it took –all this helped incredibly. To be honest, I can't imagine what it cost her.
There was a period in time when I was afraid that she would not be able to deal with her emotions so bravely and that I would have to comfort her somehow. After all, during my months-long treatment, information came in different ways, not always positive. When she came to see me at the hospital, she kept repeating: “Focus on your treatment. Everything is fine at home, don't worry. Don't worry about trifles. The most important thing is that everything is fine here.” The realization that I have such a person next to me has helped me overcome many difficulties. I am sure that without her, all this would have been one hundred times harder.
- Do you lead a normal life now?
With the exception of routine medical examinations and check-ups, I lead an absolutely normal life. When people ask me if I have chronic diseases, I answer yes, I have Waldenstrom's macroglobulinemia in remission. I consider myself an absolutely healthy person now. However, I stopped smoking and over the past year I have gained 10 kilograms.
It so happened that when I found out about my diagnosis, in 2018, I was planning a grand event with my friends - participation in a sailing regatta. After I found out the diagnosis and understood what kind of treatment was coming, I decided, after weighing all the pros and cons, not to cancel my participation in this event. Frankly, I had reason to believe that I would never be able to participate in something like this again. I went on a wonderful trip with my friends. We had a great time in Croatia and competed in yacht racing: sea, sun, sails, salt spray. I didn't feel as good as I used to, and there's quite a lot of physical work on board a sailing ship. Immediately after this adventure, I went to the hospital. As soon as the 10 months of treatment ended, the first thing I did was to start exercising carefully and planned a hike in the mountains. This item has been on my wish list for a long time. While preparing for the ascent of Elbrus, I realized that this was another test for me, a self-test to return to a full life. Before my illness, I already had climbing experience. I knew myself, I knew my body and how it reacts to stress during the preparation stage, during acclimatization and in high-altitude conditions. It so happened that everything went well.
- What in your life today reminds you of the disease?
Once every six months, I come for a routine examination to Alexander Evgenievich Grachev. It's probably the only thing that reminds me. After undergoing the main stage of treatment, I had a course of supportive therapy for a year and a half. I would come to the NMRC for Hematology and spend several hours under the drip. There's no need for that right now.
- Did the doctor tell you about the risk of relapse?
Yes, unfortunately, no one is immune from this. There is some statistical information on this topic. For me, this is a matter of my personal attitude to this risk. What is the probability that walking home after work, you will meet a dinosaur on the street? It's unlikely, but there is a chance. If you constantly think that the disease may return, that this whole story may repeat itself, it burns from the inside. Then the efforts that you as a patient, your doctors, and the nursing staff, have put into your recovery, will be in vain. I would like to take this opportunity to tell you about those doctors who, together with Alexander Evgenievich Grachev, dealt with my health. Autologous transplantation was masterfully performed by Darima Samunkoevna Badmazhapova. I was sincerely impressed by the caring and professional attitude of the nursing staff of all three departments of the NMRC for Hematology, where I was treated. Thank you all for bringing people back to life.
A person who cannot cope with emotions, and worries that the disease will return, works for the disease. Your emotional state has a strong influence. I am convinced that it is better to take advantage of the chance, and returning to normal life, think less about the fact that the disease will return. Life is a cool thing, delicious. You should not forget about this, and try to taste life from all sides.
- Four years have passed since your recovery. What events have happened in your life during this time?
In addition to the planned pregnancy that happened during my treatment, we also now have a daughter, who is two and a half years old.
- What would you say to yourself from the height of the experience gained during this time? What advice would you give to yourself in 2018?
I would say, “Tune in to win, and everything will be fine.” And to all the doctors and the medical staff of the NMRC for Hematology, I want to say thank you once again and a low bow to you.
- Is there anything else you would like to say?
I wish the entire staff of the NMRC for Hematology of the Ministry of Health of the Russian Federation success, patience and good health. Don't forget about yourself! The amount of energy, mental strength, emotions and knowledge, experience and sleepless nights that you devote to patients cannot be overestimated. Do not forget about yourself. Go on vacation and relax. I hope that I am not misunderstood by saying this, but not only do patients need you, but also your families. Do not forget about your health and take care of yourself.
And to people who are now faced with onco-hematological diseases, I want to say that after learning about the disease, do not think that this is the end. This is not the end. Rather, this is a disease that can be fought at the NMRC for Hematology, effectively, professionally and at a high-tech level. And here, at the NMRC for Hematology, cool specialists do not just fight for patients – they know how to defeat the disease.
Photographer: Denis Lapshin
We thank the ArtMaison Gallery for an excellent location for the shoot.
