Just a quick update to let you know how I’m doing. Not too great, I’ve been feeling nauseous, shaky, and exhausted. Hopefully, it will pass soon. The hospital staff is nice, the room a bit small, and since I’m in isolation I am not allowed off the room. Two visitors can come at the same time, and they have to pass through a double door ‘airlock’ and wash/disinfect their hands before coming in.

Tonight I will be admitted to Spaarne Gasthuis, in Hoofddorp . I called the head nurse of the hematology department today to tell her that I was surprised by the last minute changes to the treatment plan and to talk about what I can expect. She told me that they carefully talked to the VUmc yesterday with the team of experts there, about my situation and that they agreed that a four-day course of Ara-C was more suitable than a two-day course. She told me that tomorrow morning they will place a PICC line at the radiology department. This is a catheter that will be used for the administration of the chemo therapy, antibiotics, and other medications. At the same time, this catheter can also be used to draw blood for blood tests.
The Ara-C will be given twice per day for four days. Because as a side-effect it will destroy my platelets and white blood cells, I will have to be in isolation until the immune system is restored. This could take 3-4 weeks she told me. Isolation means that I can’t leave my room and that there can be only two visitors at the same time in my room.
They will treat me with antibiotics as a precaution to prevent infection; sepsis could lead to serious complications.
I feel ok at the moment, my hair has started to grow again, and my veins have stopped hurting. It feels counter intuitive to go to the hospital to feel sick. I have to try my best to keep the end goal in mind.

The address for regular mail is:
Spaarne Gasthuis
T.a.v. Bram Platel
D3 Oncologie, Hoofddorp
Kamer 3C02
Postbus 417
2000 AK Haarlem

The hematology department at the VUmc called me this morning. They told me that they were having problems and were over booked. Therefore they will now admit me to the Spaarne Gasthuis, a hospital in Hoofddorp that the VUmc collaborates with. If you thought the VUmc was far away for visitors, they just proved that it can be worse. Tomorrow evening I will be admitted and the chemo will start on Friday.
Also, the hematologist of Spaarne called me today and told me that his opinion was that the planned two-day course of Ara-C (the chemo agent), was too short. He told me that he spoke to the VU (some hematologist I have not met) and increased this to four days. These last minute changes make me extra nervous. I thought the treatment plan was well thought out by the experts at the VU, I wonder wether it is a good thing that this plan is changed by a hematologist who doesn’t know the ins and outs of my very complex case….

Adrienne left with Thomas and Nils to go to Philippines. The plan is for her to go there with the kids to visit her parents in Manila. After spending a bit more than a week there she will travel back on the 10th alone, leaving Thomas and Nils with her parents. On the 25th she will pick them up again.

In the mean time, I still haven’t been called, so I am still waiting until the VUmc has a bed for me. I hope I won’t have to be home alone for too long.

I called the hematology department at the VUmc this morning, I wanted to know if I could expect a call before next week or that in the weekend anyway nothing was going to happen. They let me know that the first time that I could be called would be on Monday. No guarantees, of course, it could be any day next week.

Yesterday the hematologist called, so I thought the chemo would continue today… Wrong! They called to inform me that it is very well possible that the hematology department will not have a bed available for me this week and that I will only be called-in next week. Unfortunately, they still couldn’t predict when they would have any space, so still, they will call the day in advance to ask me to come in before 11 am the next day. Only now, it can be either this week, but also next week… To quote the eloquent 45th President of the United States: “sad!”

I felt more like spending the energy that I had with the family than on updating this blog, which is why I didn’t write an update since Friday.
During the meeting with the neurologist this Friday we had an extensive look at the MRI scans. All lesions show a significant size reduction. They haven’t disappeared, but they also haven’t stayed the same or grew. These results mean that the treatment so far has been effective and things are progressing as planned. Still, there are more treatments to come, and the next one will be with Ara-C in the VUmc. Ara-C, also called cytarabine is a modern drug, it was first synthesized in 1959, well after the second world war. It is a great drug that will certainly cause immune system suppression and will most likely cause nausea, vomiting, and headache. I will stay in the hospital until my immune system starts to regrow (probably this will take around ten days), when this happens they stimulate this growth even more with a growth factor Filgrastim (Granulocyte-colony stimulating factor -G-CSF-), which will increase the number of hematopoietic stem cells in my blood. This stimulation will be done by injections for two days; these injections will likely cause nausea, fever and bone pain. After these two days, they will start collecting stem cells from my blood. I will be hooked up to a sort of dialysis machine that will extract these stem cells from my blood. This apheresis will take around 5 hours. Afterward, the stem cells are cooled in liquid nitrogen, and I can go home for a couple of weeks. Later these stem cells will be used to regrow my bone marrow after the final course of chemo therapy will destroy it.

You can imagine that I can’t wait for the call of the hematology department at the VU this week. They will call me one whole day in advance to inform me that they are expecting me the next day.

We just came back from the neurologist and the MRI of last Friday shows a big size-reduction of all lesions. Good news!

This week has been about trying to be not too nervous for the MRI results of tomorrow afternoon. The specialists assured me that unless the MRI shows “some sort of explosion,” it would not change the upcoming treatment plans. Now I don’t feel great, but I am quite sure that an explosion did not take place. Regardless, to me, the results of the MRI seem important. I hope that the two months of chemotherapy have led to measurable positive effects.

I find it difficult to keep my mind from worrying about useless “what if’s,” such as: “what if the tumors are bigger,” “what if there are more lesions,” “what if nothing has changed on the MRI?” In either case, there is nothing that I can do, except for continuing with the planned treatment. Worrying about an adverse outcome is pointless. Perhaps it will not happen, and everything is fine, in which case I worried for nothing. Or otherwise, the negative is true, and then that situation has to be dealt with, and being nervous is not an effective way to make the best of this situation either.

Letting go of negative thoughts is, of course, easier said than done.

This emoji describes best how I feel: Quite shitty, but still positive. I believe that I mostly feel MS symptoms, although it is impossible to tell what is causing how I feel. To me experiencing MS symptoms does make sense though, the chemo decimated my immune system. Last Friday the hematologist proudly told me that the blood levels of my lymphocytes are back to normal. For people that were healthy before their cancer, this is good news. When you have an autoimmune disease, unfortunately, the immune system malfunctions and can attack your own body. Hypothetically I can imagine that a strong immune system is what is causing me to experience more MS symptoms than ‘normal,’ and why I experienced them less after the chemo.