I was really tired the day after my new birthday – on Day 1. It was probably the chemo and not the blood stem cells, but nonetheless it had taken a hard toll on my body. But considering the amount of chemo and medicine I was doing okay.
Suddenly my blood pressure, which has until then been perfect, was sky high. It was due to all of the medicine. So now I am also getting medicine to lower my blood pressure. The doctors are saying that once I have been phased out of all the different kinds of medicine, my blood pressure will most likely be fine again.
It is super important that I do not get a fever during the treatment. Both because the immune system is so low that infections are highly dangerous, but also because it potentially could impact future MS attacks. I had a little bit of fever (38.1), but it was quickly knocked down by the super efficient nurses and their huge syringes with antibiotics.
The worst side effect it the nausea and the food loathing. I simply cannot eat. But at the same time it is important that I do not lose weight! So I have to drink a lot of protein-shakes, eat protein ice cream and also just regular ice creams. The nausea and the food loathing has been there since the chemo first began, but at first I could eat some things. Rice crackers with avocado is my favourite dish. But suddenly on day 2 I was puking non stop again (for fuck sake I’m sick if having puke in my nose), and I couldn’t keep any food in me. The doctors and nurses came up with a new nausea plan. It helped on the nausea, but for about four days all I ate was protein-shakes and ice cream. Luckily I love ice cream, but since I am not allowed to lose weight those protein shakes really had to be taken seriously.
On the second day, my immunesystem is completely gone. This was obviously also the intention with the chemo, so it is completely according to the doctor’s plan. All of my other blood tests also look good. Most importantly, my infection count i low, so I am not currently in immediate risk of getting any infections. One of the risks of this treatment is off course that you get an infection while your immune system is dangerously low.
It is crazy to imagine the extent to which I have been rebooted. All of my previous childhood vaccines, for instance, are gone. So the fact that there is a outbreak of measles in Copenhagen is not the best thing for me. I am rooting for vaccines!!!
My body is working on replacing all of the cells that the chemo has killed. My hands, mouth and lips are completely dry. I have to protect my mouth so that I do not get fungus. You can actually get fungus in both ends, so there are a lot of body parts to take care of!
A last side effect concerns the cells in the intestines. Currently the cells are not really there to contain the water, which means: diarrhea. I quess you can say that the thing about being reborn also means that your are going to get stools like a new born 🙂
Despite the challenges, where the food loathing is the most exhausting, things are progressing. Mathias and I are going for some long walks, and I exercise on the gym bike on my room. DR is re-running the Great Bake Off in the morning, so I can think about all the cakes I am going to bake during my workout.
As usually Mathias and my parents are taking care of me and make sure that I get something to eat – even if it is just a sudden desire for TUC crackers.
I was also fortunate that my wonderful in-laws visited me -Line, Rita and Jarl. I was so glad to see them! They even brought me a presents. A ring that is ment to symbolise that I have been stitched back together. It is really beautiful. In general, it is so important for me to be surrounded by people. Then I don’t feel that everything is on hold here on Riget!
I have lost so much of my strength, but I will get it back! I just have to practice being patience!
To give you an impression of the amount of medicine I get, and how many potential side effects there are, I’ll just show you my medicine list. This is only the medicine that I get as pills, among other things I also get antibiotics injected:
- Kaleorid (against low kalium in the blood)
- Ondansetron (against chemo side effects such as nausea)
- Pantoprazole (against ulcer)
- Predisolon (to keep me going after the chemo)
- Pregablin (against pain)
- Provera (stops bleedings)
- Unikalk forte (against osteoporose)
- Aciclovar (prevention of herpes)
- Caphosol (prevention of fungus in the mouth)
- Ceftazidim (against infektions)
- Fluconazol (prevention against fungus)
- Amlodipin (against high blood pressure)
- Domperidin (against nausea)
- Temestra (against nausea)
When you are feeling nausea, but get to eat ice cream for breakfast.
When cocio chockolate drink is perfect, because it contains enough fat, and doesn’t make you puke
The beautiful ring, that I got from Rita, Jarl and Line. I’m not allowed to wear it at the hospital (potential bacteria), but I just wanted to try it on.
We you can eat a protein ice cream with one piece of chockolate!