I was truly exotic, statistically far too young to have CLL, pregnant and a patient with an interesting combination of genetically mutated lymphoid cells. The obstetrician seemed to refer to the hematologists and vice versa continuously for future decisions and prognosis. I was getting tired of all their referring.
(What happened before?)
Again, I hoped I would finally get some sort of certainty in the afternoon at the hematologist ‘s office. Although I have to admit that the chat we had with the doctor was great and he answered all my questions, dealt with all my concerns – yet, there was no certainty. At last I understood that I would never get it…nowhere.
I asked him a lot of direct questions like: „How will I die?“, „What life quality may I expect of the years to come?“, „When will I die?“ and more of that kind. The hematologist was amazed. He told me that patients usually didn’t want to find out. That even doctors who should know better fell seemed to believe that ignorance was bliss.
I felt obliged to ask, because of my pregnancy and my family in general. Nevertheless, I guess I would have wanted to get those informations if I had been single and/or childless as well. The specialist promised he would get in touch with the obstetrician and work together closely with him during the pregnancy, around the time I was going to give birth and afterwards, when necessary.
Many things we had discussed with the obstetrician – the possibilty of chemotherapy during pregnancy, the option of using the baby’s stem cells for a transplant after birth and many other incredibly absurd issues were brought up. I did not have to fear any of them. I was so relieved. The constant dealing with life and death at the same time had worn me out. In general, the hematologist was very optimistic about leukemia as brand new medication would be available soon and the treatment was getting much better.
At night, my husband decided we would go on as planned: We would move to Southern Europe. Against all odds. Despite all concerns (mostly of others). We would enjoy life and make the best out o fit. Our decision was risky – but definitely worth it.
Two years have passed since then. I am still alive. I am more or less the same as I was before; only minor details have changed. (if you consider fatigue and similar problems minor details). But there is nothing life threatening yet – apart from the diagnosis itself. „Watch and wait“ is the approach for my diagnosis of CLL. I will do so, but I will not waste my time.
If you want to read more about my pregnancy & birth, please read on here
The story continues … every day …and in this blog