Shymo in het ziekenhuis

Shymo’s Blog: Fifteen kg extra and the new medicine

12-06-20

It was a long day full of planned, but also unplanned appointments. First thing on our list was the PICC-line. Which is necessary for the new treatment. The whole procedure took about an hour. At home I was worrying myself since the stretchmarks on my arm were very fresh and present. But fortunately it was not too bad and we even had a fun time! Next thing I had an appointment with my oncologist and the research nurse. The research nurse will guide me through the new medical scientific research. If all goes well, we will start Wednesday the 17th of June. Very exciting!

Damn, I’ve gained weight again and because of that (as the moisture keeps getting worse) other specialists are now getting involved. They think it could be due to clogged or pinched lymph nodes. Also my medication list is being examined to make sure it is not because of the medication I’m taking.

After that I had to go to the neurologist. She was very shocked from my stretch marks (compare it to war wounds) and wants to involve a Dermatologist. On the other end she is pleased about the strength in my arms and we hope that the finer movements will improve as well. We do expect that, taking into account that we still have to get rid of the moisture.

Quite often we got told that we should outsource certain tasks, since we’re doing everything ourselves. But we actually like it to do all these things ourselves, like the caretaking. But we must admit that there are some things where some help would be very welcome. So we spoke with the comfort team and the rehabilitation doctor. These ladies can for example help us with getting a hoist for at home so that multiple people can help me to move, because now my father is only capable of doing so.

To make the day even longer, in between I also had to get a picture taken from my lungs and at 16:15 was the MRI. This all in preparation of the new medicine. After the MRI we also had to get the PICC line flushed through with anticoagulant. Eventually we decided to stay for dinner in the hospital and to avoid traffic, which we did!

14-06-20

Yesterday morning I have been very dizzy multiple times and did not feel well. We put the Fitbit around my wrist and discovered quite shocked that my heartrate was 171, after which we slightly panicked and my heart rate even jumped to 189. After that the Fitbit was not able to register a pulse anymore. I was having a hard time and it was quite scary. Normally I’m quite capable of letting my body recover when something goes wrong but this time that was not the case. I was very close to passing out, but fortunately I was able to regain my control thanks to dad. After that we decided to contact the hospital and we had to come over at 21:30 for some checks. This Wednesday we’ll also start with the new medicine and therefore I was a bit frightened if we could go through with it. They took an x-ray, ECG, blood and checked all my values. Eventually the ward doctor said “go have some sleep and regarding the ECG, no news is good news. In the morning an Oncologist and assistant came by to check up on me and quite rapidly decided I could go home. Fortunately we don’t have to worry about Wednesday.

In your, carotid artery on both sides of your neck are receptors for your blood pressure. If you in an instant turn your head and you pinch that vein your body thinks your blood pressure is too high. As a result your veins open up and your body wants to lower your blood pressure. When your blood pressure eventually becomes too low you can pass out after which your body enables itself to recover/stabilize the situation. To stabilize your heart rate goes up. The thought is that this happened as I’m holding a lot of moisture in my neck. So while turning my head I’m blocking that artery. But they are not completely sure. First they though my PICC-line was too deep but fortunately that was not the case.

17-06-20

The day of the new medicine! Today the hospital day will start with taking a blood sample. After that a meeting with my oncologist and in between a quick detour to the UMC to see the dermatologist. While seeing my oncologist we get the result of the MRI. The results are as expected. Here and there some coloring and some standstill. In this case the coloring does not necessarily indicate growth, it could also be a delayed effect from the radiation treatment. My blood values are good, that means I can start with the new treatment. I’m the first person in the Netherlands who gets this medicine. Because of that a lot of people were present because also the doctors and nurses found it a big exciting. Every fifteen minutes they checked my blood pressure and temperature just to name a few. It went well and nothing unexpected happened (like an allergic reaction). That means: I’m going home!

The moisture that I wrote about earlier in the blog eventually appears to be no moisture at all. The dermatologist discovered that it’s actually uncontrolled fat storage. This came to light during the last MRI. It’s probably because of the high dosage of Dexamethasone, Prednisone and Hydrocortisone. I’m very disappointed by this. Since corona started I’ve gained more than 10 kg and it is also bothering me very much. At one point in time I gained 1 kg in five days. It especially hurts due to the pressure on my body as well as the ripping of my skin. The stretchmarks became unimaginably big and will not go away anymore. But I’m least worried about my appearance, the pain: that is the worst. And not being able to move since everything is so heavy. But, we got rid of the Dexa and Prednisone. Now it’s just a matter of time to reduce the amount of Hydrocortisone. I’m very curious if this will solve my problem, because in my current state I’m unrecognizable. Where is Shymo?

24-06-20

The second time with the IV containing the new medicine! Today would be an calm, ordinary hospital day. It eventually was, but it all took longer than expected. First we had to take a blood sample, measure and weight. I came back quite sad from that. I gained weight again… WTF! How!? Now my weight is 64,6 kg, while my normal weight is 50 kg. That means I’m holding almost 15 kg of uncontrolled fat. The oncologist picks us up and he as well is not amused. We went through the whole list of medicine again, but nothing seems to clarify. Conclusion, it should improve with this new dosage of Hydrocortisone, so we agreed that we’ll have another look next week.

On to the day admission for the IV with the new medicine. I’m glad that the blood results came back positive and fortunately I also did not have any allergic reactions or nasty side effects. It was a long day, but we had so much fun with the nurses and the assistants. That matters a lot and helps you to get through the day a lot easier! The staff of the PMC is amazing, that is certain. Now I’m awfully tired and we’re on our way home. We’re hoping for the best and that the fat will disappear soon! After all these setbacks and treatments that didn’t work we are hoping that this will be my miracle cure… are you hoping with me as well?

Shymo Magazine

Shymo’s blog: 20 years!

24-05-20

My birthday! And of course the birthday of my dear sister Zyara! That I’ve been born on Zyara’s birthday continues to amaze people haha, which I totally get! But I always enjoyed it and we always make sure to have a good time! I turned 20. That means that for already three and a half years I have been fighting and enjoying (as far that is possible). You might wonder how we were able to celebrate. Well, we came up with a great solution: open the front door and place a wall of Plexiglas (thank to dad and Elsa). That enabled us to sit on both sides and chat. And outside we decorated the surrounding with balloons and other decorations. People came in small groups and it was amazing. Mam was spoiling us with her amazing cooking skills and made mini pizza’s, pastries, and many more delicious goodies! We also had two amazing cakes from Brakenhoff and a friend made some brilliant cupcakes. Also with present I have been spoiled. From my friends I got a SHYMO magazine, with fun memories and stories, so well thought of. Furthermore I got jewelry, clothes, flowers, gift cards and many more things. Because of all that I accidentally sat in front of the Plexiglas in my chair from 11:00 till 20:00 and I was dead tired after that. But the day in advance already I said: it’s going to be worth it. Going for one day of full tiredness did make me get everything out of that day, and it was amazing! I could not have been happier.

The week in advance I was already very excited about my birthday, but of course the evening before my birthday at 21:30 the situation got out of hand again… Why does this always happen in the evening? And exactly during Pentecost weekend. Every time it goes like this. But, to give a quick summary: there is a hump beneath my scar from the biopsy. It could be brain fluid and that is super dangerous. But if it is not growing and my temperature remains the same it can wait a bit. This week the surgeon will have a look at it. So that was a big mood changer for us and they even mentioned that I might be hospitalized. We were sitting ready on the couch all evening. Then in the morning I also did not fit in any of my clothes anymore so the day was already ruined for me (and we did not even start yet).

But fortunately that was not for long, the people who came by cheered me up completely! I don’t know how they did, but within a few minutes I was back to being myself and had an amazing birthday! I am so grateful to everybody and so happy with the people around me, unimaginable.

27-05-20

They did an echo and felt and looked at my hump. It’s moisture, but they can’t tell what kind of moisture. They don’t expect it to be blood or an infections since I’m feeling ‘well’. It could be brain fluid or another moisture but because it’s not changing in size or position there is no need to remove it. As long as it remains like this and I feel alright the body should clean it up by itself. Opening it up brings more risk than letting it heal (remember my bed soars? Yes, after a year they’re still there). At the next MRI scan they want to give it some extra attention.

29-05-20

Since a couple of days it seems like I’m getting some strength in my abs back. So I hope I can do some exercise soon. With exercise you can think of that I want to eat at the dinner table three times a day. That stimulates a lot of muscles and you have to start somewhere right? That strength in my muscles is coming back could be due to the reduced amount of prednisone. That is finally possible since I’m using rheumatism medicine. The pain from the rheumatism is not there the whole time, it comes and it goes in waves. The pain that I currently have is mostly from the moisture and sore muscles, which is increasing as I’m getting some feeling back. My arm is still lacking behind, but even there some strength is coming back. Because of the moisture my skin is literally ripping apart and everything hurts. The stretch marks are now over 10cm long and more than 2cm wide (and it keeps getting worse). One improvement is that I haven’t had anything epileptic related for a while.

Something that is really nice, is that Siem probably goes into quarantine! “Huh is that fun?”, yes, because if Siem does not have Corona he can come live here with me and we can be around each other. Do realize that we have been separated for three months. And more than half of the time a windows has been between us. I am really looking forward to it, but I do realize it won’t be easy for Siem to go from a life outside to a life of quarantine. I got used to being home for weeks or even months straight, especially during the times that I felt bad. But for Siem and most people having a busy life and traveling around is their normal routine, so that is something to get used to! But still I am looking forward to it. Even if it’s just watching a movie together, that is more fun than watching it on your own. Although, I’m never really alone but that is also something you get used to.

Friday we’ll go to the PMC again for a checkup and meeting. Then we hope to hear about a plan for the future, as the radiation treatment is finished! We’ll see.