01-09-20
During the ‘prednisoneweek’ I ate a lot and everything tasted great. But this story does have a downside. I immediately notice that that my body starts to itch like crazy (from the inside), as I’m holding more moisture. But as soon as I stop taking the prednisone the pain comes back. At home we read this really good article from a doctor, who did research about the tiredness that comes along with muscular rheumatism. By reading this I started to recognize some of it. But what can we do about it? Going back to the prednisone is currently not an option for me. My oncologist and I came to the conclusion that Prednisone and I have a love-hate relationship.
Frequently we get asked what I’m exactly suffering from. Hmm, exactly? Do you have a minute? Often this is a question asked out of politeness and people don’t want to actually hear the whole answer. So often the answer to how I’m doing is “fine”.
But still, the answer will be as precise as possible for the moment, because as soon as I’ve finished mentioning everything something else has to be added to the list. Let’s start with having a rare kind of brain stem cancer and a paraplegia, which makes me fully dependent of my wheelchair. Besides I also have a defective thyroid gland, which probably was due to one of the many treatments that I had. Also I have to deal with muscular rheumatism which is only controllable when I’m getting an injection, which cannot be combined with other types of medication that I’m taking. This rheumatism pain is indescribable and is influencing my mood (haha yes that’s possible, even positive Shymo gets angry sometimes!). And then we haven’t even started yet about the physical discomfort that comes along with a paraplegia. These are unbearable, but it does make you very creative. I also suffer from epileptic seizures and am losing the ability to use my hands. I could make the list even longer, but it won’t make anyone happy.
Sometimes people don’t know how to respond, which makes total sense and it doesn’t matter. There’s no such thing as a script on how to react. “Oh, but you’re still doing well?” and “to me it seems she’s not even bothered” are reactions that I get a lot and am totally done with. Or people who start to tell what they have gone through. Instead I prefer it that people just don’t know what to say. This should make you feel speechless right?
Most people can’t imagine what my life looks like. Even at home it is sometimes hard to understand. Even I am not sure what I’m going through. A while ago an outsider even told me that it “might be all just in my head” the puking and not being able to eat. That upsets me.
02-09-20
Sometimes before we go to the hospital I already have the feeling that it will become a weird day. Today is such a day. We had to be there at 09:00 for a blood test, but we told the multiple times that it’s too early and so we eventually arrived at 09:32 at the PMC. As it was crowded, the blood test was taken at another department. I always do this with my dad. Meanwhile my oncologist already arrived to pick me up, but had to reschedule due to the delay. At that moment I have to go to the bathroom, so when I’m there we receive a phone call from the nurse “that she lost us”. After that we could go straight through to the meeting room.
First a neurological examination. They observe that I have not lost any more of my strength, which makes the neurologist not unhappy. I also mentioned that I haven’t had an epileptic seizure for 6 days!! We are talking, options are being discussed and on Friday we have a phone appointment with my oncologist. He wants the MRI to be next week, but when growth is shown on the scan I’ll have to stop with the treatment. Without a new treatment. For now the recent developments are being processed and on Friday I hope that we’re all on the same page. That it’s not going too well as I’ve stopped with the prednisone, is a fact. But that has nothing to do with the neurological part. Again we are up against a difficult choice. Personally I feel that it’s not going well and that is also what I told my oncologist. He agrees, and I also noticed during our conversation that it makes him feel sad. It does something to him. Mom, dad and I have till Friday to decide about the MRI; coming Wednesday or in three weeks. Also my oncologist has to think about it. But if we choose for this Wednesday and there are signs of growth, the treatment will stop and there currently is nothing to replace it with. You can assume that we choose to continue for another three weeks. Because if something happens meanwhile, the scan can be scheduled in a matter of days. We want to continue as long as possible as we truly believe that it could work. And I don’t believe that after only eight weeks you can already be sure if a treatment works or not. Also a new plan has to be made for the prednisone, but my oncologist is looking for a way in the middle. For example two times a day fifteen milligrams, but then I will become the Michelin man again.
The doctor gave kind compliments; he admires how I deal with my illness. And that “I show up every week and undergo everything.” I enjoy hearing that.
09-09-20
After the euphoria of last week we had a terrible weekend where on Saturday morning it all went wrong, due to a big epileptic seizure. Which repeated on Sunday. As every week we left this morning to go to the PMC. Of course we gave notice on Monday already about the problems such as new wounds, epileptic seizures and a stomach and intestines that are not functioning properly. The dose of ‘extra’ medicine for the epilepsy is being doubled. The oncologist tells us that the epileptic seizures don’t have to mean that the tumor is growing. Any patient that has undergone radiation treatment on the head can develop epilepsy due to scar tissue. Apparently the probe has to be replaced next week (which is routine). But the problem has to be solved, otherwise we’re still stuck with it. The blood results are not telling what’s going on. So as I always say: bummer with the hat on. Multiple things are in the lab cultivating. Hopefully that will tell us something, which enables new treatments. I’m still able to eat but drinking is nearly impossible, as I almost choke right after taking a sip. So we try to maintain it through my probe. I drives us mad, that almost nothing can be done in a normal manner anymore. But we continue to hope! After almost four years something has to work right? In about a month we’ll have the result from the new MRI. Unless meanwhile something happens, but we will not assume that it will. Let’s go!
16-09-2020
Today we went a bit later to the hospital than usual. It was not a bad week. I went outside and ate BBQ with Char and Gyl and I even went to the beach. So we thought to share some positivity. But before we left this morning I had a minor epileptic seizure but it faded away soon. When we were in the car just before entering the highway it went wrong, because the epilepsy came back and was intense. Lucky us there was only traffic light ahead and there we could spray the medication. Extremely tired, not approachable and weak I arrived at the PMC. Fortunately the nurse immediately noticed what was going on. She made some calls and we could go to a room with a bed. When we arrived I fell asleep almost immediately. I didn’t notice much from the blood test and weighing. Then they came to place a second probe, a stomach probe. That was painful but they managed after ten minutes. I went back to sleep but then my oncologist arrived. Normally we go to him, which computer wise is a lot more convenient. After sharing our modest “list of the week”, came the conclusion of the doctor: this week the last time for this treatment, so end of treatment. That was a hard one to swallow… A period of radiation treatment is therefore unavoidable.
After that the nurse pops by. She came to tell us that they will take a picture, to see if the new probe is fitted correctly. Meanwhile dad gets a phone call that tells us that tomorrow at 12:15 we have to be here again, for an MRI. The nurse tells us that the probe is not fitted correctly, it’s curled up in my esophagus. Sigh… The probe is being pulled up and pushed down again. I notice that my mother is having a hard time with it. Fortunately they manage to fit the probe correctly. The info about the coming period trickles in. Tomorrow we will also have a meeting with the radiologist and the radiation mask has to be adjusted. Afterwards I’ll also have a CT-scan. Meanwhile the treatment is going through the drip and we are waiting for what’s coming next…
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