Weeks 140 and 141 in the war on lung cancer have passed. These two weeks easily qualify as some of the worst on our journey so far. Luckily, it is going a bit better now. Here are the highlights:
- Early last week we went to Bergen (Norway) to do ablation of some of the growing metastasis in Dyanne’s lungs. As described in our last post, we did ablation with Prof Thomas Vogl in Frankfurt in the middle of April. Prof Vogl treated one of the metastasis in Dyanne’s lungs, but as there were 1-2 more that we wanted to get ablated, we decided to go to Bergen where Dyanne had been offered treatment.
- The ablation was done on Wednesday last week. The procedure lasted around an hour and Dyanne was under general anesthesia (in Frankfurt she had only received local anesthetics). The treatment itself went well. However, a known, and common, complication happened: pneumothorax. In short this means that a there is a hole in the lung and that part of the lung collapses.
- Pneumothorax is something we knew could happen. And when it happened we knew that Dyanne would be stuck at the hospital for at least another day. In the worst case, it could take up to 2 weeks to resolve. To treat the pneumothorax, a drain is placed through the skin and into the area outside of the lung. The purpose of this is to let the air that has escaped the lung to escape the body. Having such a drain installed is, however, very painful. One is pretty much bed-ridden as every movement hurts.
- Over the next days, the situation gradually deteriorated. The pneumothorax kept on not being resolved, Dyanne got nauseous in the evenings and vomited up the little food she managed to eat. She lost weight, hope and she was in pain.
- By Sunday she had lost nearly two kilos and was pretty demoralized. We were thus pretty ecstatic when we were told that the pneumothorax was finally resolved, that the drain could be removed and that we could check out of the hospital. We checked into a hotel in Bergen to relax and recover for a day before planning to travel back to Oslo. Then… shit hit the fan.
- Dyanne developed a fever, which is very unusual for her. We got hold of a thermometer and her temperature was 38.5. She was not feeling well. We called the hospital and they told us to come back. We took a taxi to the emergency room at the hospital and when we arrived Dyanne could barely stand and sat down on the floor there. She was put in a room where they prioritize patients according to the degree of emergency. I was not allowed in the room and had to wait outside for what felt like an eternity. She was eventually put into a separate room where a nurse started attaching needles etc. I saw the prioritization form and on a scale that goes from red, orange, yellow, green and blue, Dyanne was prioritized as “red”. Her pulse was high, she was breathing fast, she had a fever, was nauseous and she had barely eaten or drunk for the last five days.
- They drew a lot of blood, gave her iv antibiotics, iv fluid (water) and measured her vital signs every second hour throughout the night.
- The next morning she felt a bit better and at least the fever was gone. But was still nauseous and did not manage do drink or eat anything. She then got diarrhea and stomach pain. Whatever she tried to drink or eat came back up again.
- The turning point was when a doctor noticed Dyanne was vomiting and decided it was time to deal with the nausea. Instead of an anti-nausea drug she had been getting (afipran), and which was obviously not working, she was given another anti-nausea drug called Zofran (ondansetron). This worked very well and her nausea disappeared. Why they didn’t give this to her four days earlier is rather hard for us to understand.
- Over the next 24 hours she gradually got better. After input from a friend who is a nutritionist, we insisted that Dyanne get iv nutrition and they eventually agreed on this.
- The next day, Tuesday this week, she was allowed to check out and we took the train back home (no flying allowed with a recent pneumothorax).
- This week has been a week of recovery, as will be the coming weeks be too. Small, but important, steps in the right direction are made every day. Two days ago Dyanne felt hunger for the first time in almost two weeks. And tomorrow we aim to walk one round around Sognsvann here in Oslo. The aim is to regain the lost weight, and maybe add on a kilo or two on that, and generally get back in shape.
It has been a couple of tough weeks. Lots of help from numerous people has gotten us through it. A special thanks to Helene for helping on the nutrition side and to Dyanne’s parents for taking care of Naomi, cooking yummy food and much more. We hope the coming weeks will be much much less eventful.