Yesterday, on chemo day 3 there was no separate update and that was not without reason because I had a serious complication. Today we are on Day -2 (until the transplantation day) and the last 4th day of chemo can continue as usual. After the first day of chemo I was very nauseous, but after that, I didn’t have any problems with it anymore. Chemo day 2 went well, although I continued to suffer from my shoulder where the subclavia line is placed, which is needed so that the chemo (and other infusions) can be administered.
But yesterday (on chemo day 3) things went a bit wrong (apart from the HSCT program). The chemo was fortunately already administered in the morning, but I became increasingly short of breath and continued to suffer from a sharp pain on my shoulder blade. It was certainly striking when I was constantly out of breath while I was video-calling with my family in the Netherlands. Dr. Fedorenko was making his round at the department that morning and I think he was a bit shocked. Even though I kept smiling, I described it to him as if I had a bullet wound in my shoulder. I have no reference, so I have no idea to what extent the pain is ‘normal’ or not after placing a subclavia line. Apparently it is not normal so ‘Hop’ into the wheelchair, and immediately I was driven from department to department. An x-ray showed that the upper half of my right lung was constantly filled with air, which prevented me from breathing in and out. In short, I gradually got a fully collapsed lung (pneumothorax) in the last few days. I have to say that I am really happy to be in an academic hospital and that all teams here are immediately accessible. Approximately 300 HSCT patients are treated here every year, so many scenarios have already been passed, resulting in a very calm and adequate response of the staff. It certainly gives a safe feeling. Simon was regularly coming along with me, among other things via the Russian underground system, with which the hospital buildings are connected to each other. This tunnel system is also useful in the winter during extreme frost, but man… you can really get lost down there! And then those typical 90s style tile work through all those corridors… Quite funny! Oh well, an extra dimension to the experiences here at Pirogov hospital ;).
Anyway, the scan was not good and within an hour I was brought to surgery. The surgical ‘theater’ was one like you would expect in a Quentin Tarantino movie with metal walls. Also an experience in itself. The surgery was very intense and painful. And no, you will not get a anesthesia or something (this is also impossible because you have to be conscious during this procedure). It was just a local anesthetic when it was necessary to make a cut to place a pink-thick air hose in my lung. So now an air hose is coming out of my lung above my chest, which is sewn to my skin with a thick blue thread. With this tube I am now connected to a lung machine next to my bed. A 2nd x-ray showed that the tube is positioned correctly and functions effectively. After a visit to the pulmonologist I could be brought back to my room.
Quite a funny story by the way… But right after the surgery, while I was still in the operating room, I started to faint a little because of the pain, so I mentioned this was happening. The thing is that I still had to be taken back to my room by wheelchair (and cross that entire Russian tunnel system again, and they’re not pushing me slowly!). My own wheelchair has a low backrest so I was afraid I would fall out of it. So since I indicated that I was fainting, Dr. Nikolay went with a very old-fashioned (but effective!) solution: I got a big cloth or a pile of hydrophilic wipes pressed into my hand that was soaked with a very strong scented substance. I forgot what it was, ammonia? It could have been Russian vodka or something, haha! “Here, sniff this, every time you think you have to paint.” And I remember, no matter how blurry and absent I was, the full way back to my room I kept thinking about doing a prank with Simon, as he was waiting in my room until I returned. So once back in the room I was like , “Here, smell this. Smells good man!” Simon was super worried and waiting for me to come back, a little awaiting what I would say and how bad I would be like… and then I arrived with that stinky cloth that I handed over to him. 🙂 Oh well, it was quite an unusual situation today, which could have traumatised me, but instead, I can only look back and think how funny I handled everything. 😉
Anyway, that was yesterday and once back in the room I could recover and rest in bed. My breathing was fine again afterwards, only the hellish lung pain at the back as if there was a knife in my back, that is still terrible. Yesterday and tonight I had many painkillers and a lot of morphine. How I got this pneumothorax? It happened during the placement of the subclavia line. I must have been a bit too skinny or maybe they pressed a little too hard. Anyway, my lung was ‘grazed’. It was just bad luck and yesterday was a terrible day, but it does not have to have any effect on the HSCT treatment and the program remains the same for the time being.
Chemo day 4 continues today as usual. Tomorrow I have a day off and they will take the lung machine off. Maybe I get an extra day of rest and the transplant day might shift from Tuesday to Wednesday.
In addition:
Lilian is from the Netherlands too and her HSCT treatment is almost finished because she is 2 weeks ahead of me. Simon and I have had a lot of contact with her husband Rob in the last 2 weeks. As a farewell, they had planned a ‘dinner’ at Lilian’s room with her stem cell sisters and partners tonight. No idea how I managed, but together with my lung machine I stumbled to her room together with Simon and we had a great evening. I guess I can say, the morphine works well! 😉
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