I love life, it’s so beautiful!
Dear members and friends of SPBS – another story is ahead of us; recognition, diagnosis, treatment and life with chronic myelogenous leukemia is the story of our friend from our SPBS Association.
Joanna: The doctor said we’re all going to die someday and went #OnkoHero “My results were going down a lot, interferon didn’t work very well. The doctor kept giving me a piece of paper to sign if I wanted to continue the pregnancy,” recalls Joanna, who was diagnosed with “chronic myelogenous leukemia” when she was 12 weeks pregnant. She was 39 years old at the time and knew that she would not have another chance to have a child. She did not know what to do, she could not make the decision to terminate the pregnancy, although her friends persuaded her to “save herself” first. A few days before the deadline, the baby gave her a sign. She picked up the phone and immediately texted her doctor.
This is the story of Joanna, who is a musician by passion and education. As a result of the medication, she has weakened her facial muscles, so she can’t play a wind instrument like she used to. “I still work in my profession, but the disease gave me a hard time, so I have a lot of problems at work” – she says regretfully. which ones? By absence? Not even. They were caused by the side effects of the disease. Anyone who is being treated for leukemia knows that when you take medication, your muscles become weaker. It just fell on my face. I play a wind instrument and I have a slight paresis on the right side of my face, which is not visible to the naked eye, but when I start to play, then you can see that the right side of the face does not stretch as much as it should. It didn’t completely take away your ability to play, but it did affect the quality of the music you make, right?
Three years ago there was a moment when I couldn’t play at all. I couldn’t make any sound. After 20 years of professional experience, I stood on a very big “turn”, completely not knowing what to do next. Facial paresis is something you can work on to “fix” it?
I am constantly looking for help, but no one in Poland has any idea how to work with it. I go everywhere I can – for massages, electrostimulation and many more. Everywhere I looked for help, everyone threw up their hands. We also know that everything is in our head. When something doesn’t work out, we get angry. The fact that I can’t play the way I used to play is the biggest problem for me. I was diagnosed for myasthenia gravis, but it was not detected. The results improved and the problem persisted. Now I’m learning to play again and it’s better, but I still have a long way to go if it’s going to be like it used to be All these problems are the effects of the disease you’re dealing with, but let’s go back to the beginning of this story. What were the first symptoms that made you alert?Fatigue and weight loss. At that stage, I was under a lot of stress in my personal life. I thought I had no strength because I was pregnant. I always wanted to sleep. When I had days off, I didn’t take my pajamas off at all, and you thought it was normal during pregnancy. Until the research Yes, it was not the first research, but subsequent ones. For the first ones, the doctor did not write me a referral for morphology. So the first morphology was done in the 12th week of pregnancy, where the result showed that I had 1,400,000 platelets, and a few days later it was 1,600,000. Their number was increasing at a dangerous pace. I went to the branch every day.
On December 11, I went to the ward, on December 13 I had a bone marrow harvest, and I left the hospital on December 23. It was also then that I found out that I might have chronic myelogenous leukemia or essential thrombocythemia. For this purpose, a bone marrow was taken to check if I have the Philadelphia chromosome. The results turned out to be chronic myelogenous leukemia, which was generally better news for me because of the lighter treatSurely treatment was started immediately? Unfortunately not. After leaving the hospital, I had to wait. I didn’t know what would happen to me. All the doctors could prescribe me was interferon. I had an appointment with a hematologist who deals with pregnant women on January 6th. I was injecting myself twice a day and waiting for my appointment. Unfortunately, during the visit to the haematologist, it turned out that I still cannot take medications because the pregnancy is too young and the risk to the fetus was too great. I was asked if I still want to continue this pregnancy because the chance of me carrying it to term is slim.
This is probably one of the worst things a pregnant woman can hear. The worst thing was that no one could tell me anything. I had to decide if I wanted to have a baby. I was 39 years old. I knew this was my last chance to have a baby and I wouldn’t have another one. Over and over I heard from doctors that they do not deal with pathological pregnancies and that my case requires special care. They just said I had to find a doctor. I was lucky that later I found doctors who agreed to help me and still believed that it would work out. My gynecologist took care of me throughout my pregnancy and we still keep in touch.
What was next?
My scores were “flying” down a lot, interferon didn’t work for me too much. The doctor kept giving me a piece of paper to sign if I wanted to continue the pregnancy. I had to consent in order to continue treatment. Up to the 24th week of pregnancy, I was able to terminate it. I knew that this child was already big and I couldn’t make any decisions. I just lived day by day. I don’t think I’m a hero. I couldn’t make any decisions. I don’t know if I could go on living after an abortion.
Did you know what termination of an advanced pregnancy looks like? Yes, you have to give birth to this child and wait for it to die outside the woman’s body so that she can continue to heal. I was waiting all the time. Every week I went to the hospice for an ultrasound and by one of these Mondays I had to make a final decision. It was the Friday before the ultrasound appointment. I went to the doctor who said that he had never had such a case, but seeing this fetus has no objections. Pregnancy was already very advanced, 3D ultrasound was performed. The girl was developing normally, but the decision was, of course, mine. After that, I went home and went to bed. Then I felt her first movements. They were so strong, as if she wanted to give me a sign. I immediately picked up the phone and wrote to the doctor that I felt clear movements of the baby.
I will add that when I went to give birth, I weighed 5 kilograms more than before pregnancy – 63 kilograms to be exact. I had almost no stomach at all, and when I lay down, I was completely flat. I didn’t look pregnant. On Monday I went to the doctor and signed the consent for treatment, I was given medication. After that, I was in the hospital every week or twice a week. I was working at the time. I had some downtime, but I went to work so as not to go crazy.
In this way I reached the 34th week of pregnancy. I remember that I was supposed to go to a concert in Katowice, but the doctor told me to go to the emergency room. Initially, the doctors wanted to “hold” the baby in the belly for two more weeks, but the baby did not grow. On Friday I went to the hospital, and on Wednesday I had a caesarean section under anesthesia. I had absolutely no idea what was going on, I wasn’t aware.
How did you feel after giving birth?
I was on morphine, so I didn’t interact much. I saw the child only on the fourth day. She was in an incubator but breathing on her own. She was very strong after everything that had happened to her. She was tiny, weighed 1800 grams, and then “dropped” to 1600 grams. She was a very tiny “chicken”. I had no support from my family. I felt very lonely in my illness. I could only count on a friend who lives in the States. We had to discuss everything remotely, but she helped me a lot. These were really difficult things. I wondered what would happen, what would happen to the baby if I didn’t survive. I asked a friend to take care of my little one in case of my death. I must also mention that I also received help from the Rak’n’roll foundation. I survived, but the first two years after Helena was born were very difficult. A lot of miracles in this moving story Yes, especially since in 2012 I was diagnosed with thyroid cancer and then I heard from the doctor that if I ever got pregnant it would be a great miracle. Well, we have this miracle.
Have any side effects of the disease or treatment affected your daughter’s health?
At the moment, the little one is 5 years old. There are no side effects. She does have asthma, but she might as well have had it when she was born “at term”. Immediately after birth, she was tested for leukemia right away, although the chances of passing the disease to the child are usually small. She had severe anemia, at one point she stopped eating completely, she had no strength. She spent almost a month in the hospital. She was artificially fed throughout her infancy because I couldn’t breastfeed while taking medication. She has a very strong character now, which I suspect was already in her womb.
Does she know about your illness? She knows, but in a way accessible to her. You can’t cheat her because she feels anyway. He knows that I have to be in the hospital every month and I have tests that I go to the doctor. She is aware of it.
How is your life with the disease now?
Due to the side effects, I was unable to work normally. The doctor reduced my dose from 400 to 200 mg. I was taking it all the time and was in remission at the same time, so we tried to stop it. After about 8 months, the disease came back “with a bang”.
I had to take the same drug again, which gives such unpleasant side effects as swelling on the face or other parts of the body. Unfortunately, I have experienced them. I felt a lot of muscle weakness, I wanted to sleep all the time, my face was swollen, but I believed that life is more important than appearance. I was fighting all the time to change this drug. I finally succeeded, I got a newer one, after which I have no swelling, but there are other side effects – it puts a heavy burden on the liver and kidneys. Everything is under the doctor’s control and the tests come out as normal.
How do you remember the doctors throughout the healing process?
I’ve been very lucky in this regard, although not always. I remember a situation when I found myself in the hematology ward. I was lying in the corridor because there was no room for me. The doctor on duty came to me and told me in such a cold voice that “either leukemia or thrombocythemia”. Then I sat at the end of the bed and asked if I was going to die. He just told me that we’re all going to die someday and left. It was terrible for me.
What about working during pregnancy and illness? Patients often try to hide their condition from co-workers. No one at work knew that I was pregnant. Only two friends whom I asked not to tell anyone. They seemed to know about the disease, but not much. I didn’t want to be removed from my duties, I wanted to function normally. After Helena was born, I was only six months on maternity leave. I didn’t want to stay at home, I wanted to get back to playing. When I got back to work, I saw that something was wrong. I felt that when I was playing, my face “didn’t listen to me”.
Do you feel any limitations now because of your illness?
I can’t combine some herbs with my medications, because it can cause undesirable effects. I can’t drink St. John’s wort or eat grapefruit. There were bigger problems earlier – when the first drugs started to cause vision loss. I had a so-called migraine with aura, but no headache. At some point, the image began to spin and I stopped seeing. This lasted about half an hour. It happened to me once at work at rehearsal, then I left the room and sat down. This has happened to me a few more times since then, even while driving. The doctor referred me for a CT scan of the head and all additional eye tests. None of these tests worked, and the problem disappeared after discontinuation of the drug. These side effects were listed on the leaflet, but marked as very rare and happened to me.
About two years after my diagnosis, a good friend of mine also developed chronic lymphocytic leukemia. Recently, it turned out that my brother-in-law has myeloma. I do not know how it is possible that there are so many aggressive diseases among young people, so I encourage you to listen to your body and check yourself regularly.
Thank you for the conversation
