I don’t have any energy. But I’ll try to log how the treatment is progressing. So much is happening that I almost forget about it myself.
I connection with the blood stemcell treatment the doctors are counting towards day zero. The new birthday! The day the stem cells are transplanted.
The day began early in the morning. I had a new venous catheter operated in. It was a small surgery. It only took about a half an hour under local anaesthesia. They told me I could get additional anaesthesia, but it wasn’t necessary. I was wrapped in plastic, and laying with my head tilted back. It didn’t hurt, and I couldn’t really feel anything but the doctors ‘boxing’ me around a bit. At some point I could see a screen with the venous catheter getting closer and closer to my heart. Honestly, it was weird! Contrary to the first venous catheter that I got this one has to be close to the heart. This is super important, because the chemo that then enter into all of the central bloodstreams without ruining the body.
After the surgery Mathias and I went back to my room and then the chemo began. Before the chemo my body had to be given mineralts, so I was attack to the ‘Machine’. The chemo itself only takes about an hour a day, but I am strapped to the Machine for five days to ensure that i get enough water, minerals, and all sorts of medicine. The chemo went well. I was fine, but obviously tired.
The nurses trained my so that I could take blood samples from and clean the venous catheter. The is because if you can do some of it yourself there is a lower risk of infections, and also because it is important to take part in your treatment – therefore I am also administering some on the medicine myself.
During the night the craziness began. Not surprisingly I got nausea – actually I was puking my brains out. Obviously I got some medicine against it, but it turned out that I got a very rare and violent side effect from the nausea medicine. Seriously, I usually never gets side effects! Both my arms cramped, my hands locked in most absurde hand signs and I couldn’t separate my fingers at all. Everything was spinning and shaking – and I was still puking! My legs also began to cramp, but luckily not as much as the arms. So… no sleep on the first night.
On day -4 I was obviously totally exhausted, but the amazing (!!!!!!) doctors is telling me that it is very important that I exercise during the treatment. Therefore I jump on the excise bike in my free hour between 10-11. One hour without the Machine!
At 11 the ‘rabbit’ begins. I’m calling it the rabbit, because it it an antimatter against the cells that we want to get rid of made of: rabbit. The human body it not necessarily happy about being given rabbit, so the nurses pays extra attention to blood pressure etc. I din’t experience any major side effect from the rabbit. The chemo went fine.
The night began really well. The nausea was manageable. But the Machine was making trouble. It was beeping and beeping and beeping. The trick is that it is okay to just press OK until the nurse is there then it isn’t beeping quite as often and quite as loudly – but enough to keep you from getting any sleep.
In the morning is suddenly got a fever and shivers. It took about 3-4 hours and was most likely due to the rabbit. It was manageable.
Same procedure again. One hour of free time between 10-11, followed by rabbit and chemo. As the other days getting the chemo in went well – the side effects comes later. It wasn’t pleasant, but I got a feeling that things were progressing. I also got a bit more sleep!
The day was once again spent in the company of the amazing crew: Mathias and my mom and dad. They are there by my side whenever I need them! Mom is knitting a bit, dad goes for a walk, they solve puzzles and Mathias is teasing me 🙂 And then they make sure that I know that I have backup. That I am not alone in this big mess. It is such a gift knowing that I don’t have to go through it all alone.
The day was also spent in the company of my amazing friend and colleague Jette, who stopped by, spoiled me and reminded of the benefits of meditation – even though I don’t meditate. During the night I was making some stretches, starring up and taking in this whole crazy journey.
Here comes the humiliation!
The thing is.When you get such a high dosis of chemo you also need a lot of water and minerals for the body to cope.
Therefore the doctors sets a limit value – some kilos above your normal weight – and then that is the maximum that you are allowed to weigh including all of the extra chemo water. My limit value was 69kg. The problem was that I was constantly up at around 72kg – that is a lot of kilos of extra water to contain. No matter hos much diuretic I was given (and it was a lot, believe me, your are at the toilet non stop), I couldn’t get rid of the water fast enough.
In the morning I was super happy when yet another amazing nurse entered. I had had a bit of sleep. It was on top of things! But then she gave me the diuretic and ran out the door (patient emergency). The minute she left my stomach started to cramp in pain and I was puking, shitting and peeing at the same time. The was so incredible humiliating to stand there in the middle of all the puke and the faeces – and being tied to the fucking Machine with even more water. But then again that is the true story about how I lost 1 1/2kg in 10 seconds!
Done with the chemo: JUBIIIIIIIIIIIII!
Today I was only supposed to have rabbit! Or so I thought… During the day my red corpuscles dropped (it is the white ones that we want to kill). So I needed a bag of blood. My blodtype is rhesus negative 0, so it is not that common. My mom immediately volunteered her blood. We laughed a bit, because she also have MS, so going though all that chemo to get more MS blood would be kind of counterintuitive. Anyway the hospital gave a pint of rhesus neg and during the night it began to work. I got a bit of energy again. Hurray!
Then I was ready for day ZERO. My new birthday. But you’ll have to hear about that in another post.
Me and the Machine!
This is how you look when you have less than an hour, need to tuch a tree and have about eight kilos of extra water in your system.
The rabbit is somehow sorted through this thing!