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Myeloma Stories

Iveta S. – Brno, Czech Republic

I´m 45 years old, I´m married and have two sons. My story did not start with the diagnosis of Multiple Myeloma but the beginning was somewhere else ….. I do not know exactly where, in fact. I only know that diagnosis is a consequence. Simply the consequence on how much stress, problems in life we have, what is a sign of life and it is also about how we can achieve balance with unpleasant situations.

On the other side of the scale there is a pleasure. And the scale outbalanced a lot the other side at me. When I started to have problems (at that time I was not forty yet), the problems grew and I had to use depression drugs. But there were other problems, quite physical ones. There were often bits of temperature, headaches and spine pain. My GP told me many times that I had to relax and that I was only tired.

So several visits were repeated and diseases were added. One of those attacks (I could not stay straight, I was sick and I had been vomiting at that time) my employer even took me to my doctor personally. I got again a sickness leave for a week and valuable advice – no stress and rest a lot! However, it was easy to say but it was more difficult to realize.

It was not in my situation. I can see it completely different today. All it was possible but a man has to step up his priorities of life at that time it did not work. Another good advice of my doctor was: “This your temperatures are not temperatures – you know what, do not measure yourself and so”. But I did not measure myself so much. I did not have time for it. I simply felt the bit of temperature on myself. And I did not live comfortable with it. And this unbelievable situation was lasting three years. Then I had uncontrolled nose bleeding moment by moment and I could not get rid of it.

My friend arranged ENT examination for me at the University Hospital in Brno. When the doctor saw that the treatment absolutely did not work, he asked me when was the last time I had a blood examination. It was such a long time ago that I could not remember it. Finally I was showed the blood count. The results were absolutely not normal, but it was not the diagnosis yet. After nearly two weeks of various tests I had not thought about their existences before. They put a lot of pressure on me!

I was working in the evenings, days I spent in waiting rooms in different departments. After my second visit to the hematological department, I was told: “I´m afraid madam, you know, we do not seriously think about myeloma yet, you know, you are too young for this diagnosis.” My husband took me to hospital and neither of us knew what multiple myeloma was.  Just that it was very serious (as they said in the hospital). Something was said in the examination result. I held it in my hand and it was about the hematological department. At that time my husband told me that I should not have taken it personally “this oncological department.” Probably nowhere else they could do it.

Actually, what kind of disease I was told by my psychologist (and I can say not in a pleasant way at all). She came to me at the department when I had been there and my treatment had started. The situation was bad for my boss as well. No wonder. I was gone from day to day. I was working in a private company and I still continued to word there, in fact it was a normal situation in that time. I worked behind the counter, provided business agency, warehouse agenda, payrolls all accounting, sales returns, planning work for craftsmen and others. And the evening I did housekeeping. Who else? In fact, I was the only woman in the company.

The week-sickness leaves which my GP wrote me really did not help me at that time. All was waiting for me after my coming back I had to do everything. I stressed much more than before.

My husband and I wanted to buy a small house somewhere in the country for several years. I had just an impression that I would not able to carry on everyday situations in the city center. It was my dream, I had been dreaming nearly ten years but there was no success. We had an appointment for signing a mortgage in the afternoon that day when I was admitted for a treatment at The University Hospital Brno. The meeting did not take place and we wanted to withdraw from everything because I got an impression that my life was ending. We had “a subcontractor” for the construction site an older man who helped us.  My husband told him what had happened to me and he told my husband a wonderful thing: “take care of his wife while I´m building your house. Maybe after a half a year when you know how it really looks like and what the prognosis is like, we will tell one another if you keep the house or you sell it.”

It was actually a miracle in this situation, my husband was bearing my illness worse than me. He stopped talking, he was losing his weight and I knew, he was almost ruined. I had to sit down with him and discussed everything. I´m not a psychologist but I was successful in calming my husband down.

I was 42 years old and I did not want to die. One son was a university student, the other one graduating soon from secondary school.  My dream was already fulfilled, we both did so much for that. My family also supported me and made me feel a master of my house.

Simply and shortly – six months of chemotherapy, followed by autologous transplantation –  we made a decision that we were going to start building. Today, two and a half years after the transplant I´m sitting in the study room of our new house and I do not like to look back to that period. We have lived here for more than a year. It is wonderful. Here, every morning I go walking with our old dog to see horses. They have an area behind our house. I look at forests, meadows, sheepsand I´m, happy.  The myeloma will not get me, you can bet on it – I want to enjoy this for a long long time.

– Iveta

Categories
Myeloma Stories

Josef H. – Plzen, Czech Republic

A large part of my working life I worked as a boss of the car service. I had common life problems like everyone else. At work I often spent ten hours every day. I had to ensure my customers be satisfied with all the repairs made are first-rate and on time. My work also became my hobby. I loved cars and bikes. In the past. I worked as a motor- bike mechanic at the motocross racing in the whole Czech Republic. I cooperated with a very successful speedway driver at the time. Unfortunately he died at a motocross racing event abroad.

Time to time I had a back pain at that time, but always after a short treatment it passed away and all seemed to be alright. I always thought that it was from the cold from car repairs and races.

My big hobby is cycling, I gave my time to mountain biking together with a bunch of friends in my free time. Time to time I attended some bike races. Biking was my hobby when I was young. At first I rode on a road bike (a mountain bike was not available at that time), later I bought a mountain bike. The bike races were not separated into the age categories and I was always placed in the middle of the pit lane.

I borrowed a motocross bike in the spring of 2006 to remember my young time and I slightly felt nothing serious from my point of view. When I was lifting the motorbike I felt a pain my back. I did not pay any attention to it because it was not unusual for me. The pain increased during the summer. I visited the Orthopedic Department. However, the pain did not step back therefore I visited other two physiotherapists. However, they did not help me as well. I had such a back pain that I could not ride a bicycle at all.

My friends advised me what else to try. One of them told his son about my problems and this man worked as a doctor in The University Hospital in Prague. He arranged me an examination of MRI (Magnetic Resonance Imaging) at the end of summer. The examination was done at the weekend. On Monday next week the doctor phoned me and asked me if I had been at work and how I had felt. He recommended me to go home. He said that it would be best if somebody took me home. His other information was that MRI examination discovered a problem with my spine and they would wait for me in the Neurology Department in The University Hospital. And in the end he recommended me to travel to Prague. I was taken a back of course and my colleague took me to Prague.

After the formalities at Department Reception I went for on examination in Neurology. I was told very firmly that my vertebra had been totally ruined and my spine was kept only with muscles the so-called “on nature.”  Furthermore, the doctor said to me that although I was in the hospital some careless movement could destroy my spinal cord. Immediately I also learned all possible consequences of this situation. I was admitted and all the time the doctor was coming to my bed and with a hammer knocking knees or tickled me on the foot. I had to move toes. The doctors were leaving and coiling their heads. I asked them why and the answer was: you did not see your MR images.

This situation really scared me. I was very unhappy and I imagined a lot of bad future situations including the idea that I would to be depended on a wheelchair. I was operated immediately at the same week. I remembered I moved foot fingers after my waking up, which confirmed the success of the operation to me. I was told about my histological results, it was multiple myeloma (MM).

Although I was satisfied with the doctors and the staff I decided to start treatment of disease in University Hospital in Plzen. I came to the Oncological Department with my MR images. There was a very pleasant and humorous conversation with a doctor who said to me that it was in fact “children disease in Oncology”. He used this comparison as an example of very successful result in the treatment, because I knew him as my customer and he knew my cycling activities.

The same day the doctor sent me to the Hematological Department and a Multiple Myeloma specialist explained all to me. I received a brochure about the treatment of Multiple Myeloma and in two days I took the first dose of chemotherapy. My treatment was carried out in accordance with the brochure, including the autologous stem cell transplantation.

I missed my work that was why I still worked and walked with my wife between chemotherapy cycles. I obtained a full disability pension. After the transplantation I spend time at the cottage. I slowly began to regain my strength and I was looking for a new full-suspension bike. The friends of our cycling team supported me a lot and helped to buy it. And in two month I started to go by bike again. I started really slowly indeed because the power was missing. Therefore I put performable goals to myself. “Today I come to forest. Tomorrow I will try to come in the racks” and so until the time when I got back tissue strength and again I could slowly rode away.

In this time I have had a complete remission for a few years. I am not trying to think of the disease. I´m able to rode a lot of kilometers by bike and per year I ride 2 500 – 3000 kilometers. I also go skiing and cross-country skiing. My hematologist understands my activities. Last year I spent a week with my friends in Hrensko (this is a very nice biking area in the Czech Republic) and we travelled a big part of the Saxon Switzerland. We are going to travel to the Czech Canada this year. I still go for regular medical examinations, every day I exercise 15-30 minutes according to the book “The Five Tibetans”, several exercises with weights and a few clicks and I spend my time with hobby.

In the meantime our family have grown a little bit so we enjoy five grandchildren. I can only say thank you to all of the doctors who helped me come back into full-fledged, common life. Thanks also to my friends for tours, biking and skiing. And of course great thanks to my wife. She was with me the whole treatment and sometimes it was not easy for her at all.

– Josef