We’re in week five of the new treatment, which as planned starts every week with a blood test, measuring my weight and length. I’ve lost another 1,3kg, which is good. But unfortunately the blood test shows that my red and white blood cell values are very low. This week I’m allowed to get the medicine, but next week is still uncertain. We’ve stopped with the rheumatism medicine for now as that could be the cause of my low blood value, very annoying. Also after my meeting with the oncologist I’m getting an examination from a neurologist. Who thinks I’ve lost some strength in my right arm. Which I agree with, but on the other hand this neurologist never examined me so how reliable is this outcome then? We’re done early this time and are on our way home, we thought. In the car on the way home we realized that we had to go to the pharmacy for medicine. So that became another tour through Utrecht, whoops!
With a whole list of things that are not going so well, we are on our way to the hospital. First of course we’ll have the blood test, after which we are waiting for our meeting with the oncologist. The meeting immediately turns to the epileptic seizure from last weekend. We notice a small relieve when the oncologist tells us that it could be due to the scar tissue from the radiation treatment. But when he examines my hand, he does not rule out that the tumor could have grown. We are discussing if we have to stop the treatment and get a scan immediately. Another option is to continue, which is possible since my blood values are good enough. That would mean that the MRI would be in three weeks. We choose for the latter. The epilepsy is for now under control with medication. We we’ll go for it, is what we think. We haven’t learned a lot and are taking a passive stance for now. Maybe against our gut feeling, but we keep our hopes up that the treatment works! I’ll receive this medicine for another two times before the scan. I am working so incredibly hard for my miracle, so please let it work.
It will be a busy day full of meetings and new faces, because the oncologist and server of my doctors are on holiday. First the weekly blood test and the whole circus around it. The social worker comes by and finds a euro on the floor. She gives it to me with a big smile; “a lucky coin”, she says. So sweet. Maybe you wonder: why does this make you happy? But it are the small things that cheer me up. That’s why the Princess Maxima Center is not a bad place to be. After this they’ll connect my intestinal probe at the WKZ. A routine job, we thought. Not. Dad and I walk back to mom to tell her that there were some complications. The probe didn’t want to enter my intestines and curled up in my stomach, which resulted in 45 minutes of pushing, twisting and pulling, all without anesthetics. It made me go crazy. But still I did make them laugh by telling that I had chocolate for breakfast, since I could not keep anything else in. For weeks eating has not been my strongest point and that is why I need the probe. I’m also currently not capable of swallowing my pills, as it all comes back up again. Finally the probe is placed, which is great and now we can go back to the PMC.
There we check my weight. 59,7 kg finally below 60 kg again. Blood pressure, pulse and temperature are also all under control again. Then we have to wait. After one and a half hours I’ll get the treatment and meet with the (replacing) oncologist. She is full up to date, which is very nice and calming. It is decided that to increase the dose of the medicine against epilepsy, since the seizures continue. After that the dietician comes over to give an explanation and to calculate how much food my body needs. The nurse teaches us how the probe device works. Our name is Korver of course and we all want to do it ourselves, instead of getting someone over from home care. Meanwhile I’m getting the treatment and the doctors and nurses keep coming and going. At 15:30 we’re done, getting our beads for the persistent chain and are on our way home!
We’re actually not aware of the schedule when we arrive at the PMC . It was simply not clear to us. All we knew was that it was going to be a very long day. Fortunately it was all in the computer at the counter. Over there they arranged that we could go straight through to get a picture taken of my stomach, to see if the probe has been placed correctly. My situation hasn’t improved a bit since the probe has been placed. It’s so busy in the hospital that we can’t sit in the waiting area. Because of that we can go straight through to the day admission, where they reserved a room for me. I’m always glad when they arrange that, because being in my wheelchair all day is very exhausting. So having a private and calm room really helps! Soon we hear from the (replacing) oncologist that the probe has been placed correctly. Good news, but on the other hand we are wondering why I still can’t eat or drink. Also I haven’t lost weight this week so half of the probe food is still too much. A mystery that the doctors will have to resolve. The MRI has been rescheduled from 15:30 to 14:00 and the time slot where I receive the medicine has been set to after the scan. Very nice! During MRI I’ve watched Shrek, got the treatment after and at 16:30 we were on our way back home, where Siem was waiting for us with dinner!
We have the result of the MRI and to express it mildly, the results are bad!! What we discovered is that there is growth on the location where the epilepsy is coming from. This wasn’t a total surprise to us, since the epilepsy had been gone for a while. They also noticed growth in my back where the coordination of my arms is located. I hoped to badly that this would not be the case. You do expect it a bit, but there was a very small chance that it would be because of the uncontrolled fat. But when you get the confirmation you do feel terrible. For me this is the hardest part to deal with. I don’t want to go through life as a living torso, it’s very likely that I’ll lose all my self-esteem in that case. How far can you go right? I don’t know anymore. Something we also cannot understand is that, in my lower back, where it all started three-and-a-half years ago, also started to growing again. But this tumor was completely removed. The radiologist and the oncologist have been notified and the boss of the current study will also look into it. Only while I’m typing this I realize how angry this makes me. I feel terrible. I’ve been doing my best for such a long time, when will I get what I deserve? Give me bits of future.
To end this blog with a bit of positivity: the biggest tumor hasn’t grown. Still it does feel like we’re back at the start again. When will this end…