I know have to write this, but I don`t want to. I have learned to live with my chronic disease … yet I hate thinking back of the days when I found out about it. These memories still give me the chills. In December 2014, I enjoyed my job and the dinner parties we organized at home, I thought I might be pregnant with our fourth child and I was busy planning our move to Southern Europe scheduled for July 2015. The move was going to be the crystallization of our dreams. That was some weeks before I found out about my chronic lymphatic leukemia.
(What happened before?)
We celebrated New Years Eve with some friends and a lot of children at our place. At midnight, my husband and I drank a toast to “the move”, our big project. We were so much looking forward to living in another country. A pregnancy test turned out to be positive on January 1st, 2015. I wanted to get pregnant on my 40th birthday and I had managed to do so four months afterwards. We were delighted. Could this year start any better, we asked ourselves?
I went to my obstetrician a few days later. She confirmed the pregnancy and asked me to come back in a few weeks’ time. I was so glad and calculated that the baby was going to be due for my 41st birthday. When I went to have a medical check again, something was wrong. The little spot had not grown as it should have. When she realized how heartbroken I was, the doctor said we could wait another week. Wait and see I read a lot of reassuring (and terrifying) stuff online to calm myself. I conducted pregnancy tests every day – they were always positive. . I was extra careful, didn’t lift anything heavy, ate healthy food and prayed. But on the day I had to do the ultrasound, nothing had changed. The doctor suggested to have the curettage right away. I was doubtful. Maybe the spot could still grow miraculously? I didn’t want to have the curettage done, because I knew I would have to go home alone afterwards as my husband was on a business trip. Yet I gave in. I remember getting hysterical when I was given the tranquilizers before being induced narcosis. I would have loved to tell the doctors to stop it but I could not articulate my wish anymore. When I woke up, I was extremely sad. I went home alone and took care of my other children, waiting for my husband to arrive.
We decided to try again as soon as we could. Therefore I checked my hormonal status after a while and found out I was still pregnant … or pregnant again? We were confused. It was possible, but too soon. It couldn’t have worked that quickly, could it? As I had to fly to Southern Europe to deal with school applications and private health insurance there, I wanted to find out before starting my trip. I chose the next best obstetrician available, made an appointment and went there. Feverish and suffering from tonsillitis I explained my dilemma. The doctor could not see anything in the ultrasound and said we would need to check if it was a normal pregnancy which she considered the least possible option, an ectopic pregnancy or if the curettage had not worked out correctly. I had to do an extensive blood test and she promised to send a message as soon as she knew more. Off I went by plane on the next day, feeling terribly sick and slightly worried if I was going to manage all I had to in our future home country. I remember going to bed there with fever and chills, dressed in the warmest clothes I could find in the suitcase I had brought with me, a full body monkey pajama the children had given my husband for Christmas. I was bothered by the pajama`s tail and bananas during the night. On the next day, I signed up for the private health insurance and talked to several headmasters and school administrators. I filled out millions of forms and lobbied for getting my kids into the best possible schools … ideally all three of them in the same institution. I met a friend for lunch and suddenly my mobile phone beeped. A message from the doctor had arrived confirming a pregnancy and asking me to call her as soon as I got back.
That’s what I did, but I couldn’t reach her. Suddenly, late at night, my telephone rang. It was the doctor and she told me I needed to have an even more extensive blood test. I was immediately worried. I was pregnant, wasn’t I? So why would I need more blood tests? She said she couldn’t explain it to me as specialists needed to have a look at my blood, but “the results were strange”. I went to the lab where I was promised the results for the next day. When I got the results, I took pictures of them and sent them to a friend of mine who is a doctor. In the meantime, I did my own research. There were several irregularities that didn’t ring a bell. I seemed to have an excess number of lymphocytes, too few red blood cells and blood platelets. I didn’t really care, as I blamed the tonsillitis for it. Something that showed up in the test was called “tumor markers”. It sounded slightly more worrying. As mentioned before, I am a researcher. So the first thing I did was look up my various irregularities online trying to get a clue. I found about fifty different conditions which could have been the cause – amongst them was chronic lymphatic leukemia. It was the most alarming option, so I asked my doctor friend about it. He assured me that it was out of question. My blood results were most certainly a consequence of the infection I had had. But as the lab and the obstetrician had told me to show my blood test to a hematologist. The fastest way to get it done would be to bring my blood test to a hematological outpatient department.
I was busy at that time planning our move to Southern Europe. I had already given up my job as a coach in order to be able to concentrate on this task. I was still working for some research projects, but my main focus was the expat project. Also, my husband and I had booked flights to Eastern Turkey for the three smaller children and ourselves. We wanted to go backpacking with them for the first time. We would leave in a few days. I still had to pack. It took me an hour to get to the hospital. I had to be back in time to pick the children up from school and bring them to their afternoon activities. I was impatient. I entered the department and saw a sign that said “Hematology and Oncology”. I thought I was in the wrong movie. Oncology? A virus seemed to show up in my blood, but why the heck was I being sent to a cancer place. Because it was obvious that it was for cancer patients. I was the youngest of them by far, but there were bald heads, there were women discussing their wigs, some people arrived in wheelchairs, others had a very strange, yellow skin color. What was I doing there? I was going to have a baby! Having waited for three hours I complained at the secretariat. I told them that I was pregnant and there must have been some kind of confusion. I announced that I was going to leave as I had to take care of my children. The secretary asked me to stay as it would be my turn next. I phoned my sister in law and asked her to pick the children up for me. I promised to be back in time for their activities.
Prepared to tell the doctor how annoyed I was I entered the room when I was finally called. She was going through her files and I had a look at the computer screen. I saw my name and next to it the words “chronic lymphatic leukemia”. My heart started to beat faster, but I still could not believe it. Eventually, the doctor spoke to me: “As you know, you`ve got cancer. “ Those were her exact words. Under shock I answered: “No, I don’t have cancer. I am pregnant.” She replied that she was not sure I was going to be able to keep the baby, but she was absolutely sure about the cancer diagnosis. I would have to come back in two months for further blood tests. Only when they compared the results they could see the progression of the disease and tell me about my life expectancy. She said goodbye, I nodded. That was the whole conversation. I was sent to the department’s laboratory to do more detailed blood tests. I sat there and tried to digest the information I had just received. I felt numb, but tears were running down my cheeks. The laboratory assistant slid the needle into my vein. I counted twelve different vials of blood. She asked me why I cried. I told her that I had just been given a cancer diagnosis, but that I couldn’t believe it. “I am pregnant, you know” I repeated over and over again as if the embryo in my womb could protect me from any kind of calamity.
I did not have a long history of doubting whether I had cancer or not. Actually, the word “leukemia” came up for the first time during my online research and was quickly disregarded. I had been preoccupied with my pregnancy in the weeks before my cancer diagnosis. It was an obstetrician who sent me to the hematology department. My diagnosis came out of the blue. I was still relatively young. I was going to have a baby. I already had three children. I was going to move to Southern Europe. I had plans, I had so many dreams. I was going to Turkey in two days.
Was I? Or was I going to die? When? How soon?
It is known that the way a diagnosis is communicated will affect the way the patient adjusts to it and plans his or her life afterwards. My life was turned upside down within a few minutes. And it was going to take a long time until I would be back in control.
The story continues here